praying for luke

Monday

2012-02-13T08:33:00.003-06:00

We're home, and Luke just fell asleep. I don't want to jinx anything, but he was just breathing through his nose and mouth (not the Trach) while asleep. We're making ourselves wait till tomorrow to try and get him to sleep while actually capped, but my hope level just shot up about 50 points. Maybe we really can do it this time.
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Just talked to Dr. McClay. He started out his report with "I'm very excited...". He showed us pictures of the airway before and after he cut out the floppiness that we think has been the trouble all along. McClay is very optimistic that Luke should be able to be capped "100%" better now. We're talking about scheduling a sleep study and hopeful decanulation as soon as we're out of RSV season. This news is surprising and exciting. Another positive is that McClay doesn't think we'll have to stay overnight. Should be able to go home on Tylenol. Yay!
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Just got an update from the ENT, still in the OR. Looks like we're still dealing with floppies in the airway. McClay is going to do some cutting to make it easier to breathe with the cap. Probably looking at an overnight stay.
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The audiologist just came back to report her findings on the auditory brainstorm response (ABR) test. Luke's hearing is just fine. We weren't worried, but it's nice to know for sure. ENT is doing the scope now. It shouldn't take long before we talk to the doctor and then go back and see Luke.
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They just took Luke back to the OR. The plan was for his Pulmonologist to be in the OR with the ENT for the procedure, but ENT didn't seem to know that when we just spoke with him. Disappointed that we probably won't have another set of eyes and brains in the OR like we hoped. Luke should be done in a few hours.

Post Feeding Program

2012-02-12T23:22:00.000-06:00

Hey everyone, since Luke is having a bronchoscopy tomorrow, and I’ll need to write an entry about all of that, I thought I’d better finish my series of blog entries about the feeding program tonight.

We finished Luke’s day patient intensive feeding therapy program out Our Children’s House at Baylor last Thursday, Feb 2. We met plenty of new people, made some new friends, and learned a lot. Most successful I think was the new look at disciplining our toddler. I’m not sure it would work for everybody, and I have a feeling the Kevin Leman might have a problem with the reward system we’ve implemented, but I have to admit it’s working for Luke. We’ve been using some of the disciplinary techniques we used for the feeding program in other areas of our life with Luke, and so far I’m pretty happy with the results. I’ve mainly been using the idea of, “Do this the right way and you get a reward, don’t and we have to keep trying until we get it right.” When Luke takes a bite and swallows the whole bite “to his tummy” he gets to watch a little bit of his favorite show Super Why. If he pushes the food out of his mouth, he has to take another bite until he does what he’s supposed to do successfully before he gets his reward/reinforcer.

This has been working for wearing his cap on his trach as well. During the program we took a pretty substantial break on trying to get Luke to wear his cap. The weekend after the program ended, though, we went back to working hard on that area as well. Luke wears his cap, he gets to watch a movie, play with the iPad, sing songs with mom and dad, etc. But as soon as he takes it off, those rewards stop until he’s wearing it again. We can’t entertain/reward him every second he does this (our goal is to get him to wear it all day, and I think it would be impossible for me to do that all day), but this has been working quite well for periods of time where he’s getting used to his cap for the day or when he’s having trouble, or when he’s flat being ornery.

Another discipline tactic that’s helped, particularly with pulling off his HME and throwing it, is ignoring the bad behavior. We’ve concluded that many times, Luke throws his HME to get our attention or to stop something from happening that he doesn’t like. For instance, he wants to run around the church auditorium during service, we make him sit with us, and so he throws his HME to distract/voice his displeasure, etc. We’ve recently started ignoring the behavior, communicating to him that “no matter what you do to protest, we’re not stopping what we’re doing.” This puts us as the parents back in control of the situation instead of dashing to retrieve an HME. After he’s forgotten about the outburst, we’ll retrieve the HME and put it back on, 4 times out of 5, the thing will stay on, at least until the next episode. So to our friends and fellow church members, if you see an HME or a toy nearby on the floor and it stays there for a few minutes, it’s not because I’ve forgotten about it, it’s that I’m trying my darnedest to parent Luke. We have to try and keep the rules like “when you throw your toys on the floor, they stay there” as consistent as possible in different contexts. We’re still working on how to handle him taking off his HME and throwing it over the baby gate just to hear the sound it makes and when he takes it off to play with it because it’s a favorite familiar toy. But the headway we’ve made in this area is helpful and encouraging.

Because he’s pulling on his trach to voice his displeasure considerably less, we’re having a bit more success with getting him to wear the cap. Pulling on his trach is less of a habit for him, and we’ve worked him up to wearing his cap again for 5-7 hours a day on a good day when he’s not bothered by a lot of secretions.

So the actual eating is going okay. We’re still having great success with Luke opening his mouth for a bite, accepting the bite, and swallowing. We are running into trouble with him pushing out 50-100% of the food on the spoon once he’s accepted it. Luke’s speech therapist tells me that this is called a tongue thrust, and he does it probably 50% out of habit and 50% because he doesn’t know how to manage that amount of food in his mouth yet. We’ll keep practicing and be working to reduce the behavior during his speech therapy sessions returning to three times a week. Right now Luke is taking about 10 grams of puree food per meal, as a reference, a chocolate pudding cup is about 95 grams. We have quite a ways to go before we’re replacing a tube feeding, but we’re well on our way!

Overall, I’m happy we did the program, we learned a lot, and I’m very happy it’s over. I thank you all for your prayers of success and safety as we commuted back and forth from Dallas four days a week. We are so thankful that we had the opportunity to participate in the feeding program and learn all that we did.

Blessings,

Rachael, David, and Luke

Enjoying an orange with my newly acquired food exploring skills!

Wednesday

2012-01-25T17:24:00.002-06:00

Luke graduated from chicken broth to blended peaches this morning. Now I have a Baby Bullet to blend all the wonderful foods he's going to start eating in the near future!

Feeding Program: Midway

2012-01-23T09:42:00.000-06:00

Luke and I are now half-way through the day patient feeding program at Our Children’s House at Baylor. We’ve finished three out of five weeks of the program. While things are different than maybe I had expected, I’ve been pleased with the people we’ve been working with and pleased with Luke’s progress so far.

Maybe now would be a good time to describe how a meal feeding Luke used to go. Because the difference has made me feel so much better about our outlook on this aspect of Luke’s care, even if we don’t accomplish all of our goals within the feeding program itself. It used to go like this: I’d fallen into the habit of only feeding Luke a meal orally maybe once or twice a week other than when his speech therapist, Cherish was around. I eventually found feeding Luke to be too huge of a hassle to do by myself. We’d both go away frustrated and mad, and having not accomplished anything. Then I would feel guilty for not working harder at feeding him because eating is a skill he needs to learn so desperately. Before we’d start a meal, Luke would sometimes cry or fuss even before the meal began. Then I would sit down and we’d begin by me trying to get him to open his mouth: “Come on Luke, let’s take a bite. Mmm. Good bananas. Let’s take a bite. Come on Luke, open your mouth. Say “ahhh,” etc. More often than not, Luke would just hold his mouth closed. If I could get him to laugh (or even cry, I’m somewhat ashamed to admit) enough to sneak a bite on his tongue, then he’d start the gagging and coughing. Or if he didn’t gag, it didn’t matter, because he would push 100% of the bite I’d just put on his tongue out of his mouth and onto his bib. Every time. Then there’s the hitting. I avoided feeding him carrots or chocolate pudding because he’d hit the spoon and food would go everywhere: hair, clothes, floor, stuck to the wall, you get the idea. I’d also get slapped in the face. A dozen times per meal Luke would also pull off his HME, and I’d have to go retrieve it from the far corner of the kitchen. Feeding Luke in his high chair also puts me in a perfect position to get kicked in the chest anytime Luke felt mad or felt like playing or felt like delaying the bite I was trying to give him. All the while, I’m trying to hold it together, to scold him when he misbehaves, but not too much because I don’t want him to develop any more of an aversion to eating than he already has. I could usually do this for 20 minutes max before I was completely done and not up to doing it again on my own for a week or more. It was just too hard.

The program at OCH started Luke back very near to the drawing board. They introduced to us a pattern of reward when he does what we want him to do, and a combination of withholding reward and ignoring negative/avoidant behavior. For instance: there’s a TV in each feeding therapy rooms. When Luke successfully takes a bite or allows his therapist to do his oral stretches, he gets to watch a show and/or play with a toy for about 10-20 seconds. Then we pause the show, put the toy in our laps, and encourage him to take a bite. One aspect of the program that I love is that they set a timer for 20 minutes for each meal. When the timer goes off, the meal is over. It’s kind of like a “saved by the bell” for both of us. It makes it much less stressful, and I don’t have to feel guilty that I haven’t worked with him long enough. We ignore avoidant tactics like pulling off his bib, or throwing his HME or his toys. We’re communicating to him that, “It doesn’t matter what you do. Right now we’re eating, and you’re not going to distract me from feeding you. Take a bite, and then you can watch more Super Why.

Almost without even noticing, we’ve moved from me feeding Luke once or twice a week to 2-4 times a day. Using these basic hints to modify his behavior has helped tremendously.

Here’s how our meals go now: Frequently throughout the day when we’re home, Luke will point to his high chair, say “Eee” (“eat”) and sign “more.” Yeah. For real. I turn the movie on (thanks for the iPad, mom and dad!) and set the timer. Pause the movie. I tell Luke “take bite.” He opens his mouth. I say, “close lips.” He closes his lips around the spoon. I say, “Swallow to your tummy.” Luke swallows immediately about 90% of the time the rest of the time I might have to repeat the command once or twice. And about 75% of the time, he swallows all of what’s in his mouth without pushing it out. The whole process takes about 5 seconds. I’m still amazed.

We’re working very hard on helping him learn to manage the amount of food that we give him with each bite. The therapist’s theory of why he was pushing everything out of his mouth is that it was half habit and half that he was feeling overwhelmed with the amount we were giving him. This is where we scaled way back. For about a week and a half, we’ve just been feeding him chicken broth. We’re only dipping the spoon into the broth to give him a taste, not giving him any broth in the bowl of the spoon. At first, even though we weren’t giving any volume, his was pushing everything out, even the saliva created by tasting the broth. With some chin and lip support and behavioral modification, we’ve worked up to giving him about a drop of broth with each bite, and he’s swallowing everything. The idea is helping him be very successful at this low level of skill, and then we’ll add volume to each bite as he tolerates it.

At times this process seems painstakingly slow, but I’m thrilled at this progress so far. I really believe that if we get no more accomplished in the next two weeks, I’m already glad we came. I feel like I’ve got my feet beneath me now, and I can handle his behavior. I feel like when the five weeks are over, I can work with Luke’s regular speech therapist to increase the volume he’s getting with each meal. It may be awhile before we are able to replace one of his tube feedings with an oral meal, but the piece of mind and the confidence I’ve received from my training at OCH is worth a tremendous amount to me.

I thank you all for your continued prayers as Luke and I commute back and forth to Dallas each day, and as we work to improve Luke’s skill level. We are very blessed to have a program so accessible to us, and to have a spiritual family like all of you keeping us lifted up. Thank you so much for your love and support.

Blessings,

Rachael

Playing with Carrots!

2012-01-12T14:23:00.002-06:00

Feeding Program: Week 1

2012-01-08T21:56:00.000-06:00

I don’t know if I’ll do this every week, because I don’t know how much change there will be from week to week of this program, but I wanted to blog about our experience so far in the day-patient feeding therapy program at Our Children’s House at Baylor.

First, thank you for all your prayers so far for this particular challenge. For those of you who haven’t heard what’s going on, here are the basics: For about 18 months, Luke’s nutritionist has been strongly recommending that we get him evaluated and on the waiting list for the intensive feeding therapy program at OCH Dallas. Several things have held David and me (mostly me) back from exploring this option until recently. First, we wanted to concentrate fully on getting Luke’s trach out. We both had reason to believe that once Luke’s trach came out, oral feedings would go much smoother, and intensive therapy wouldn’t be needed. I heard stories from another mom whose child was trached until age two. The child had eaten next to nothing orally before, but was eating pancakes the day after she was decannulated. While I never was holding out for instant success quite like that, I dreamed of feeding being much easier than it is now. Second, the program takes place at Our Children’s House at Baylor in Dallas. We spent five weeks inpatient there in between Medical City and home. I still can’t put my finger on why, but that place still evokes some very dark memories and emotions. I couldn’t envision subjecting ourselves to that place again for an extended period of time.

As you all know, our hopes for Luke getting decannulated this past summer did not become a reality. Luke is getting older (two and a half!), and seeing as we will have to wait to get his trach out until spring at the earliest, eating made its way to the top of our list of priorities.

Our nutritionist told us that there is a months-long waiting list to get an evaluation by the program, and then another months-long waiting list to get into the program itself. I started the process in October, and the director gave us an evaluation date in February. We settled in for a long wait. In early December, the psychologist in the program told me Luke would be starting the day-patient program January 3. After some confusion, it was decided that Luke could go ahead and begin the program without an evaluation, and the therapists would evaluate him on the spot on the first day of the program so he could begin Jan 3.

Luke’s first day of the feeding program was Tuesday. David went with us the first day to help us get acclimated. Everything went smoothly. The commute hasn’t felt nearly so much like it did when Luke was inpatient there as I thought it would. We’re in a completely different area of the building than we were before, so it’s not too hard to take this as a whole new experience instead of carrying those negative feelings from our previous stay with us. I’ve been trying very hard to stay in the moment and learn all I can and not let Luke’s entire medical history overwhelm me as it sometimes can in situations like these.

Luke and I leave the house and arrive at OCH just before 8 am on Monday-Thursday mornings. First Luke has speech therapy for 30 minutes where the therapist does stretches and oral exercises with Luke. She has been practicing with Luke with an empty spoon to encourage him to open his mouth, accept the spoon, and close his lips around the spoon without the pressure of food.

For the next 30 minutes, the therapist feeds Luke a meal, still working on accepting the spoon (with or without food on it), closing his lips around the spoon, and attempting to keep the bite in his mouth (he has a terrible habit of pushing the food out of his mouth with his tongue and swallowing maybe only 10% of it). By watching from behind Luke, so I don’t distract him, I’ve learned how to stay consistent with the language I use to encourage Luke to take a bite, to appropriately address his avoidant behavior, and really cheer him on every time he does well. I’ve also learned how she makes appropriate use of a timer (the meal isn’t over, no matter what kind of fit you throw, until the timer beeps) and a movie (you can watch the movie as a reward, but when you don’t take your bite, we stop the movie until you do).

For the next hour, Luke has occupational therapy. I admit that I’m less impressed with this portion of the program so far. I expected the OT would spend the hour working on skills that would lead up to Luke feeding himself, but so far that’s not the case. Monday I will ask the therapist some questions and see if we can make a plan that is more in line with our hopes and goals for what we want the program to accomplish. I have gotten some really great pictures of Luke in a helmet riding the tricycle though!

After OT, Luke has a 30 minute break. Luke plays with the iPad or the toys in the play room to blow off some steam. Last, Luke has another 30 minute meal. This meal is supposed to take place with the psychologist, but she’s been out this past week due to a shoulder injury. Instead Luke has been having his last meal with the speech therapist again. That’s been fine, but I’m looking forward to talking with the psychologist, hopefully on Monday and getting her perspective on things.

Thursday was the most difficult day. Luke threw a fit during the first meal, and I jumped to soothe him. The speech therapist corrected me and asked me to ignore his fit and let him choose to take a bite when he realized I wasn’t going to rescue him. This correction stung a little, as you might imagine, but to her credit and his, Luke quit his tantrum as soon as I had finished suctioning him. He was then clingy and cried through much of his OT session. Luke’s nurse and I theorized that Luke was trying to get me to “rescue” him again so he wouldn’t have to work. I made the decision to leave the room for his last meal so I wouldn’t be a distraction to him. This was very hard for me to do, because when I told the therapist about my decision, she told me that the protocol for the week was to not allow parents to watch through the window either (I don’t know why). So with teary eyes, I went to wait in the community room with the other moms and kids. Luke’s nurse reported that he had a fairly good meal. Needless to say, we were both ready for the early weekend.

This weekend has made it evident how much a little knowledge and firm consistency will take you. Luke has been eating this weekend better and more quickly than he ever has before. We still need to work on keeping the food in his mouth, but learning the strategies that I have in only three days has truly helped both of us. David and I have successfully fed Luke two meals each day of this weekend, and at four of those meals, Luke has finished all of the food I’ve measured out for him (it’s not a lot of food, but we’re starting out small) in the 15 or 20 minute mealtime. This is quite an accomplishment, and it’s boosting my confidence.

I just want to end with a word of thanks for all of your continued prayers that Luke will completely blow away all of our expectations for him during this program, and that we can have energy and a good attitude during the commutes and long days ahead this month. I hope that next week at this time I’ll be telling you of all the milestones Luke has reached.

Blessings,

Rachael

Merry Child

2011-12-06T13:08:00.000-06:00

Thanksgiving 2011

2011-11-30T12:19:00.002-06:00

*thanks Aunt Rebekah for the pictures!*

Fall 2011 Trip to the Arboretum

2011-11-08T21:00:00.001-06:00

"Fall 2011 Arboretum"

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Luke's World (pics)

2011-11-08T17:26:00.001-06:00

"Luke's World"

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Luke’s Tonsillectomy and Other Updates

2011-11-08T16:49:00.000-06:00

I apologize for the length of time in between updates. I kept waiting for something really big and decisive to happen so I could group everything into one update, but it seems like we’re a family destined to live with more than our share of ambivalence.

It looks like I wrote the last long update in July after a bronchoscopy. We still had strong hopes for getting Luke capped around the clock, past a sleep study, and to decannulation by the end of September. Believe me, if that were still the course we were on, you would have heard about it by now.

In mid-August, we took Luke to his ENT appointment to do the “soft scope” to check out the damage the scar tissue could be doing to Luke’s vocal chords. Dr. McClay ruled out the scar tissue preventing Luke from using the cap. At that time he decided to see if removing Luke’s tonsils and adenoids would open his airway enough for him to tolerate the cap. We booked surgery for two and a half weeks later to allow Luke to be off of his aspirin regimen before surgery.

Dr. McClay removed Luke’s tonsils and adenoids on Aug 29. The surgery was successful, although Dr. McClay noted that there is still some floppiness in the airway below the reconstruction that hasn’t seemed to improve significantly, even with wearing the cap up to 9 hours a day. The surgery was otherwise uneventful.

We had planned that day to have them keep Luke overnight for observation, but were a little surprised when they told us they’d sent him from surgery to the Cardiac ICU. We used to go there routinely after Luke’s bronchoscopies, but they had been sending him to the regular cardiac inpatient floor after procedures for some time. When we were able to go back and see him, we were shocked and scared to see him on a ventilator and o2. The nurses told us that he had stopped initiating breaths when coming out of anesthesia and had been desatting (low o2 level in the blood). They felt they needed to put him on a ventilator to help him wake up from anesthesia. Luke was very obviously struggling even with the ventilator. David told them that Luke used to “fight the vent” when he was on it at home. Basically Luke would push against the vent instead of allow it to give him breaths. He would wear himself out that way, then do fine when we disconnected the ventilator. The nurses graciously listened to us, and we took Luke off the vent, but his o2 sats didn’t really improve. For about 30 minutes, it was very scary while David and I stood by his bed. We had to keep rousing him to remind him to take a breath because he would just forget. Gradually his sats improved, and although Luke still slept, he was out of anesthesia, and we weren’t quite so concerned. We decided that my mom (who was visiting for a few days) and I would stay with Luke in the ICU and David would go home so he could work a little in the morning. We had a really rough night managing Luke’s pain, but we didn’t have any life threatening scares. We were home before Sesame Street the next morning (fastest discharge from the ICU ever)!

The next few weeks crept along slowly. We were cautious beginning to use Luke’s speaking valve or cap, worried about swelling and throat soreness. About a week after surgery, Luke’s speech therapist, Cherish, was able to get his cap on no problem during a feeding session. That helped us cross the threshold, and we were able to get his cap on for increasing amounts of time in the following weeks. Only once though was I able to get Luke to sleep with the cap on during his nap. He wouldn’t fall asleep with it on as he had before, but I had to slowly cover his trach after he fell asleep until he was breathing through his nose and mouth, then I placed the cap on. He slept that way for about 25 minutes, and it was a struggle every single second. He repeatedly roused and pulled off the cap, and I had to repeat the process every time. It was very apparent that he wasn’t breathing anywhere close to comfortably. Probably even more concerning was the period of time in which I was working on helping him to fall asleep with the cap on. He cried and cried, which is pretty standard for him, but this time we had his pulse ox on him. He desatted into the lower 60%s during the meltdown before he fell asleep. David and I both feel that Luke should be able to maintain acceptable oxygen saturation during a crying spell with the cap on. We’re still at a loss as to why this is happening.

So the maximum time we were able to get Luke to wear his cap in the days leading up to his post tonsillectomy follow-up with the ENT was about 6 hours off and on (not continuous) and no sleeping with the cap. Going in to the appointment, we didn’t have high hopes for getting a sleep study scheduled, but we probably weren’t quite prepared for the response we got from the doctor during the visit.

We explained our successes and failures using the cap the last three weeks. Dr. McClay basically said that he didn’t understand why Luke is not able to tolerate the cap better. He told us that he had seen two kids with airways worse than Luke’s this summer, and one was decannulated and the other was capped around the clock. He snuffed out our hopes for decannulation before fall by saying, “Well, it’s not going to be this year…” He said there was nothing more surgically that he could do for Luke, and that we will have to figure out when Luke is pulling off the cap because he wants control and when he does it because he isn’t able to tolerate wearing it. I wanted to say, “Hello! That’s been the problem for over a year!” He seems to appreciate the problem of trying to make a two year old do what he doesn’t want to do, but didn’t supply any help or solutions for solving the problem. McClay wants to see Luke in December, just to see how it’s going. We left pretty discouraged. I cried. David and I talked on the way home from Plano. We’re both disappointed that we have to wait for yet another spring before we can get rid of the trach, but somewhat relieved that we have a final answer for the season. The pressure’s off. No more scrambling to make him wear his cap before the fall hits.

That afternoon, I felt more and more agitated. I believe strongly that Luke doesn’t deserve to be given up on like I felt Dr. McClay was that afternoon. I called Luke’s pulmonologist, Dr. Copenhaver. I had to leave a message, but felt better when his nurse called me back within the hour. She listened patiently as I told her about McClay’s conclusion. I told her that I was seriously considering taking Luke down to Texas Children’s Hospital in Houston, where they have two ENTs in the top 1% in the country for a third opinion. She told me that she understood and that she would consult with both Dr. Gelfand (Copenhaver’s partner) and Copenhaver when he got back from out of town the next week. Dr. Copenhaver called me several days later and listened to my concerns himself. It was several weeks before anything happened, but Dr. Copenhaver spent the time talking to several other physicians getting multiple opinions.

Finally, about 5 weeks after my initial conversation with the nurse, Dr. Copenhaver called David. He told David that he strongly believed that we would get no different information or plan of action if we took him to Houston. Luke’s condition is bewildering, but it indeed seems that there is not surgical treatment available to help Luke tolerate his cap. At this point, it seems that Luke and his airway just need to get bigger in order for him to be capped comfortably and for us to eventually be able to decannulate him. Copenhaver instructed us to begin a new breathing treatment regimen, a steroid called Atrovent, which can possibly strengthen the floppiness in his airway. In addition, we are not to push Luke wearing his cap to the point of discomfort.

So we began this new breathing treatment about a week and a half ago. So far, we can’t tell any significant change in Luke’s tolerance of his cap. The most he’ll wear it is for a few hours each day, off and on. So, on this front, we’re just trying to maintain and get Luke through the autumn/winter.

There is no guarantee that we’ll get his trach out this spring. You may remember that Luke has one more heart surgery which should take place around age 3-4. It’s possible that he could be scheduled for surgery this summer (2012) or next. Dr. Kao isn’t in a hurry and believes we may be able to delay it even further if we want to. She would prefer to have Luke’s trach out before his last heart surgery. It all depends on how quickly Luke grows and how his o2 saturations hold up to his growth. When his sats start trending downward again, it will be time to start thinking about surgery.

You also may have heard that Luke had another procedure done in August. After Luke’s July broncoscopy, I was playing with him and noticed for the first time that his left thumb didn’t seem to be able to straighten. The thumb was fixed at a ninety degree angle. I took him to the pediatrician who referred him to an orthopedic surgeon at Children’s. When we saw Dr. Ho, she confirmed that the condition, called trigger thumb, was not serious, but it would need minor surgery to correct. She did surgery the morning of August 17th. Luke recovered well and we were home before noon that day. The worst part of the whole episode was that after surgery Luke had to wear a cast keeping his elbow bent at 90 degrees for two weeks in order for the tendons in his thumb to heal correctly. Luke wore his cast like champ and didn’t let it slow him down at all. Once the cast came off, it was evident that his thumb healed remarkably well, and is now fully functional. Luke’s thumb problem had nothing to do with his other medical conditions whatsoever. Sometimes, this just happens in kids’ digits.

In other news, it has now been two years since Luke starting getting speech/feeding therapy from our beloved speech therapist, Cherish. She is very skilled and works very hard with Luke. However, we are still not seeing the gains in his eating skill level that we would like. Part of that is my fault. I’m sure all of you who are parents can appreciate the energy it takes to feed a two year old that doesn’t want to eat. Most days, it’s just too much of a battle to attempt to feed him a few ounces of pureed food. Luke’s into hitting these days, and food gets everywhere on top of crying fits and battling a trach cap. I’ve completely fallen out of the habit of feeding him on my own and lately have just relied on Cherish to feed him on the days she comes to our house.

We’ve recently decided to follow the recommendations of Luke’s nutritionist and sign him up for an intensive feeding therapy program at our Children’s House at Baylor. This decision was certainly not made lightly. It’s a huge time commitment and it will take place at the main campus of our Children’s House at Baylor. David and I still dread any time we have to visit there, so being there every day for weeks on end will be very emotionally challenging. I haven’t gotten all of the details of what the program entails, but here’s my understanding so far. After his evaluation with the program’s speech therapist, occupational therapist, and psychiatrist in February (there’s a very long waiting list for the evaluation), he will likely be referred to the OCH day patient program. This I think will consist of Luke and I heading to OCH every day, Monday-Friday, for a four-five hour period in which he will be fed multiple times in addition to participating in other speech/oral exercises and occupational therapy.

I know this update is already quite long, but let me take a few minutes to talk about Luke’s progress in other areas as well as how we’re doing as a family. Luke is now 27 lbs 8 oz and 35 in long (long torso, short little legs). He’s mostly wearing 18-24 month pants and 18 mo – 2T shirts. Now he’s not just walking, but running. He’s SO FAST. He’s getting into everything more than I thought possible. Our living room is a perpetual disaster area (see pictures in the most recent photo album I posted). Luke climbs on anything he can get his hands on. The other day, I found him sitting in the middle of the dining room table. Luke also likes to push over furniture (I think it makes him feel powerful, and he likes to hear the noise). So our end tables and dining room chairs are always turned on their side or upside down. I’ve learned that it’s futile to turn them upright again, because as soon as I do, he makes a beeline for the furniture and pushes it over again. He has been able to say a few words with his voice including “up-uh” (“up”), “awahwahwah” (“water”), “I-deh” (“I did it”), and “adah” (“dad”). Sunday I successfully taught him to make the “mm” sound, but no success yet with “Mamma”. David has gotten Luke to peepee in the potty a few times before his bath (very exciting). We’re not officially potty training, but getting Luke used to the idea of where his potty should go. Our plan is to take a very relaxed approach to potty training and let Luke tell us when he’s ready.

Luke still loves letters and words. I think thanks to LeapFrog toys and Sesame Street, Luke can identify all of the letters of the alphabet with about 95% accuracy (with the occasional mix-up of a Q and a O or an L and a J). When we brought Luke home, we purchased for him the Your Baby Can Read program, and he’s been watching those videos 1-2 times a day since then. Just a few weeks ago, Luke started making significant progress. I now have a two year old that has learned about two dozen sight words and can sign or point to words like “spider,” “nose,” “ears,” “look up,” “arms up,” etc. It is so awesome to watch. For so long, David and I were so concerned about Luke’s brain and intelligence due to his multiple seizures and his sodium deficiency at 10 months old. We are convinced that Luke’s brain is right on track, and we praise God for it every day.

Luke has made significant progress in his fine motor skills under the tutelage of his new occupational therapist, Brooke. He sees her twice a week back to back with his physical therapist, Erin at Our Children’s House in Rockwall. The combination of these two therapies has helped Luke really improve in core strength and fine and gross motor skills. We couldn’t be happier with that area. He’ll be caught up to age appropriate skills in no time.

This past week we visited Luke’s nephrologist (kidney specialist) and neurologist (brain specialist). The nephrologist discontinued Luke’s sodium supplement that he’s been receiving three times a day since his sodium issue at 10 months. He ordered blood work to be done to check his sodium level five days after the discontinuation. Dr. Quan called me yesterday to report that Luke’s sodium level is holding steady, and also that his kidney function is much improved since he saw Luke over a year ago. It seems that Luke’s kidneys have almost completely healed from all the damage they received in his first year of life. We praise God for his healing power. We are waiting on hearing from Luke’s neurologist pending Luke’s blood work results to see if we can discontinue Luke’s anti-seizure medication as well. We should know something on that front tomorrow.

I’ve always believed that prayer works. I’ve seen way too many miracles happen in Luke’s life to believe otherwise. But I’ve always struggled with the idea of prayer: God is going to do what he’s going to do, whether I pray or not, regardless of what I want, so does it really matter that I pray? I’ve always recognized the need for prayer in my relationship with God, but I’ve always struggled to put it into practice on a regular basis. Intercessory prayer is not my spiritual gift by any means. Recently God has shown me a truth that has comforted and challenged me. I realize that I may be the last Christian on earth to get this through my head, but here goes anyway: We do not pray to try and change God’s mind. God is sovereign and powerful regardless of whether or not we acknowledge that in our hearts and in our prayers. We pray because the process of prayer aligns our will with God’s. I think that most often, God chooses to act on our spirits—to change our hearts and desires instead of our circumstances—if we are open to him doing so.

I remember when Luke was three months old and we asked everyone to pray that God would heal Luke’s airway so that we wouldn’t have to take him home with a ventilator and a trach. David and I both felt so defeated as we watched the tracheostomy orientation video. But as the deadline came closer and closer and we prayed and prayed for healing, I realized that instead of God healing Luke’s airway at that time, He was gently leading me towards more comfort and less loathing of the idea of caring for Luke with a trach. Something similar is happening now. Am I disappointed that we couldn’t decannulate Luke this year? Absolutely. If God offered to take his trach out tomorrow, would I enthusiastically assent? Absolutely. But I feel like we are no longer hanging all of our hopes and dreams on the day Luke gets that glorious plastic-ectomy. I’ve begun to come to terms with the fact that this is how our family is, and this is how it’s going to be possibly for a much longer time. I’ve stopped trying to predict when his trach will come out. Although I still look forward to that day with anticipation, I’m not franticly trying to rush the process as I’m guilty of doing for so long in the past. I am much more at peace with our circumstances. Frequently, I am tempted to pick the issue back up again and start worrying about Luke’s airway. And that’s when I remember my friend Rona’s words as I left the PICU with Luke for the first time: “Remember: God is sovereign.” So we’re going to spend at least another five months with a trach and everything that comes with it. But I’m not any longer going to allow that fact to control my mood or attitude. I am striving to rest in God’s timing and not fight for my own.

Thankfully, we have no medical procedures scheduled for Luke at this time. Our plan is to keep him as healthy as possible and to encourage him in his development through the seven therapy appointments he has each week. We’re going to enjoy spending a week in Oklahoma for Thanksgiving and a week in Albuquerque for Christmas. We’ll attend his various check-ups through this season, and then see what the springtime brings. We appreciate your prayers as always for sustenance, for endurance, and for improvement. We also welcome you to spread our family’s story with whomever you will. We believe that our story clearly tells of God’s power, sovereignty, and fervent love for his children. We thank every single one of you for taking the time to read these updates (however long and infrequent) and for every prayer you breathe on our behalf.

We love you,

Rachael, David, and Luke

Boomer Sooner

2011-11-04T19:51:00.002-05:00

"Boomer Sooner 2011"

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September 30th

2011-09-30T14:00:00.002-05:00

Two years ago today, we brought my precious baby boy home for the very first time. I so treasure this day, and every one that my Treasure is in it! I love you, Lucas!

Tuesday

2011-09-06T11:24:00.002-05:00

Up until today have only achieved getting Luke to wear his speaking valve a handful of times for a few minutes each. Haven't pushed him too hard. This morning Cherish Flanagan, the best ST in the entire world, completely bypassed the speaking valve and put on the cap with no trouble. Luke's breath sounds are still coarse, but I think we've still got some swelling/soreness going on. Praying for big strides before our ENT appointment next Friday!

Monday

2011-08-29T13:34:00.002-05:00

Approx 2:10 pm
Luke's resting fairly easily now. No vent or fiO2. Got IV tylenol and morphine on board. Sats, hr, and respiration are good. Cranky when he wakes up every once in awhile. Otherwise we're just hanging out. Thanks for your prayers.
********************

Approx 12:40 pm

Luke's having a little more trouble than usual coming out of anesthesia. He was on a vent when we got back to see him but he's off now. Having a bit of trouble breathing and with pain, though managing with morphine and tylenol. Settling in to the ICU for a sleepover.

********************

Approx 12:30 pm

Done. Luke did great. Doc didn't need to dilate the airway. Still some floppiness. We'll be in the ICU probably overnight.

********************

Approx 10:30 am

Just took Luke back to the OR. Should be about an hour til he's done. Also met up with @Keri tonn and met their sweet family for the first time in the surgery waiting room. Balm for the soul.

********************

Approx 9:30 am

In Pre Op, waiting to see the doc before they take Luke back

Thumb Surgery

2011-08-17T10:05:00.000-05:00

Approx 7 am

If anyone is up and cares, we made it to the hospital. They should take us back to pre - op momentarily.

Approx 8 am

They wanted to get his electrolyte levels. Three sticks and no juice. Poor guy. They just took him back to the OR. Should be just a few minutes before he's done

Approx 9 am

Out of surgery. Did great. Thumb straitens now. No problems. Should go home today.

Approx 9:30 am

And we're on our way home! Fastest hospital visit EVER!!!

Surgery Update

2011-08-10T22:49:00.002-05:00

Okay, hand surgery's booked for a week from today, Wednesday at 6:00am. Glad we could get it in sooner rather than later. On a down note, Luke wouldn't go to sleep with his cap on today. I tried several times, but it wasn't happening. Score today is Luke 3 Mom 0. :(

Thumb Surgery

2011-08-08T12:36:00.002-05:00

Visited an orthopedic surgeon this morning. Luke's thumb will require surgery to correct the condition. Good news is that the surgery is outpatient and takes about 10 minutes from falling asleep to the last stitch. He'll wear a soft cast for two weeks afterward. Surgery is scheduled for Aug 18 at Legacy.

Thursday

2011-08-04T16:12:00.000-05:00

Only took me 10 minutes total to get Luke to go to sleep for his nap with the cap on. I was shooting for 25 minutes today, but he only made it 19. I wish with all my heart that this was not such a struggle for him.

Wednesday

2011-08-03T09:41:00.002-05:00

Meeting with a caseworker today for Luke to be reevaluated for Medically Dependent Child Program and Medicaid benefits. Please pray that Luke gets reauthorized for benefits for the coming year...and for my stress level.

The Latest Broncoscopy

2011-07-18T14:49:00.002-05:00

We took Luke in this morning for Dr. McClay to have another look down his airway. This was supposed to be Luke’s decanulation day, but Luke has been struggling quite a bit with the cap, especially for naptime. We haven’t been able to get him to fall asleep with the cap on or cap him at all when he’s sleeping. One of the requirements for getting Luke’s trach out is to have him pass a sleep study with his trach capped. So we arrived at Children’s Medical Center at 7:00 this morning with no expectations for decanulation, but hope for the doctor to be able to give us an explanation for why it’s been such a battle to get Luke capped around the clock.

They finally came and took Luke back to the OR around 9:30. They called David and me back to the consultation room about 30 minutes later. So here’s the scoop:

There are two possible physiological reasons why Luke is struggling so much: 1) There is a bit of floppiness in the airway tissue below the area that was reconstructed in May. This floppiness could be causing his airway to constrict somewhat. 2) Scar tissue on the vocal chords could responsible for constricting the airway somewhat. Vocal chords open when you vocalize and close when you breathe. Scar tissue on his vocal chords is causing the airway to be more narrow than usual, so this could be why Luke can vocalize very strongly but can still have difficulty in the breathing department. Good news is that there was no granulation tissue present in the airway for Dr. McClay to remove (that’s a first). There was a portion of tissue in the airway that looked suspicious, but McClay believes that this is a small area still swollen from the frequent surgeries/broncoscopies rather than granuloma. In any case, it isn’t obstructing his airway enough to cause him difficulty.

So what’s the plan? First, more waiting. We’re going to wait one month to see Dr. McClay in his office where he’ll “soft scope” Luke to discern the amount of damage to the vocal chords that scar tissue is causing. It’s difficult to tell while Luke is under anesthesia, so a soft scope done while Luke is awake should give us more information. Meanwhile, we have the go ahead to push Luke a little harder wearing the cap. The hope is that air pressure created when Luke uses the cap will over time strengthen his airway and resolve the floppiness. No one can tell us how long that will take. Again, we’re on Luke’s timeline. Part of our problem has been wondering whether Luke throws fits when we try to cap him because he’s really having a difficult time getting enough air, or if he just doesn’t want to do it, so he cries to make us take off the cap. Because we’ve been fearful of depriving him of air and harming him, we usually relent rather than making him cry through it. We feel better about pushing him harder now that we know pushing him will only make his airway stronger and not torture him.

Obviously the hope is that using the cap will help strengthen his airway, and the only place we have to go from here is up. Stronger airway = more comfort with the cap = passing sleep study = decanulation. We have the rest of July, August, and probably most of September before we hit a deadline. McClay told us today that he won’t decanulate in winter. If we can’t get it by September, there’s another option. McClay talked a bit about a surgical procedure he can do to correct the floppiness. This would take place in the spring and would result in decanulation during the same procedure.

Realistically, we’re looking at possible decanulation later this summer/early fall. It’s possible that we’ll have to wait another several months until the spring. Meanwhile, we’ll most likely be getting to take Luke home to sleep in his own bed tonight (and us on ours!) and start with capping bootcamp again tomorrow.

Please pray with us that we can be successful in capping, passing a sleep study, and decanulating by September. Every day we long for the time Luke’s trach can come out, and we pray that we won’t have to wait another 8- 9 months before it can truly happen for our family. Please pray that God gives us as Luke’s parents wisdom in pushing and challenging Luke to wear his cap without harming or discouraging him. More than ever, we need to be firm, disciplined, and loving parents to this vibrant and willful two year-old.

Thank you for your prayers and for waiting with us. We truly love all of you.

Blessings,

Rachael, David, and Luke

Saturday

2011-07-16T09:30:00.002-05:00

It looks like the culprit for Luke's "now-you-see-it-now-you-don't" fever and illness Wednesday night can be attributed to that pesky top left molar choosing to make it's appearance. I think we'll be a go for Monday thanks to some Tylenol and your prayers.

Thursday

2011-07-14T09:35:00.002-05:00

We seem to have hit a snag... Luke threw up twice last night and started running a fever about 4:00am. It seems to have gone down with Tylenol, and I just gave him formula. We'll see if he keeps it down. We need this to got away NOW so that we can continue with the next step in the process on Monday! Pray, please!

Another Issue?

2011-07-06T11:28:00.001-05:00

It’s been awhile since I wrote a long post, so I want to ask you all for your prayers in the upcoming “Luke events”.

We are nearing the end of what our ENT calls the “LTR (Laryngotracheal Resection = airway reconstruction) Protocol. This protocol has included one major airway reconstruction surgery and several broncoscopies so far. The point of this protocol is to enable us to cap Luke’s trach and ultimately get the trach out (called “decanulation”). Based on the stories we heard from our ENT surgeon and one of our home health nurses, we expected the capping process after the LTR to be relatively smooth and easy. This just hasn’t been the case. We were able to cap Luke’s trach just a few days after the stint was removed from his airway on June 6. In the past month, we’ve been able to get Luke to use the cap for long periods of time, but it’s been anything but smooth or easy.

Luke often makes disconcerting “honking” and wheezing noises when breathing through his nose and mouth while his trach is capped. He doesn’t always make those sounds, but they have troubled us. He frequently pulls at his trach to communicate his discomfort, and has pulled out his trach or pulled it apart more than once, forcing us to do an emergency trach change and causing more concern from his parents. When Luke has pulled out/apart his trach he panics and turns blue from lack of oxygen, which should not happen at this stage in the process—he should be able to get enough air by breathing through his nose and mouth with the trach non-functional.

(After much going back and forth) We have a sleep study scheduled for Luke at the end of this week to see how he sleeps breathing with his trach vs. sleeping with his trach capped. David talked with the ENT surgeon who explained that unless we can get Luke comfortable wearing the cap all day and at least able to sleep with it for some time during his naps, there is no reason to perform a sleep study at this time. I think it goes without saying that Luke has to pass a sleep study in order for us to decanulate. Luke absolutely panics when we lay him down to sleep with the cap on. I have gotten him to fall asleep a handful of times with the Speaking valve (PMV)/cap hybrid (it’s a PMV with gauze taped over the opening to create more resistance when he takes a breath), but it’s a huge battle every single time. Our attempts at getting him to fall asleep with the cap on, or trying to slip it on him after he’s asleep have failed miserably and ended in him panicking. In addition, anytime we place the cap or the hybrid on him during sleep, his o2 sats decrease significantly.

We have patiently increased the time he wears the cap by an hour each day, hoping that it’s a matter of him becoming acclimated to the cap and strong enough to breathe without the trach, but it hasn’t seemed to help on the sleeping front.

This brings David and me to believe that we are dealing with another, unknown, airway/pulmonary issue. We don’t know what it is, but the ENT has agreed with us that it “should be easier than this.” After working up to 9 hours wearing the cap with no results on the sleeping front, David and I are discouraged to say the least. I hate torturing him by restricting his breathing, so our plan now is to again stop pushing hard and for the most part let Luke dictate when he wears the cap and when he doesn’t (within reason).

Our original schedule has been to do a sleep study July 8 (Friday) and then a final broncoscopy and decanulation on July 18. This no longer seems feasible, as we must figure out what this new unresolved issue is that is causing Luke such difficulty with using the cap. We haven’t canceled the sleep study yet, but will likely do so after we talk with Luke’s ENT probably Wednesday if he cannot sleep with the cap on by then. We are eager for this upcoming broncoscopy but no longer because we expect to decanulate Luke at that time. We are eager because we are praying that God will give Dr. McClay wisdom as to what is causing our precious little boy to not be able to breathe on his own yet. It could be that Luke’s airway has formed scar tissue or more granulation tissue. It could be that the airway simply needs to be re-dilated. Or it could be something completely off our radar that’s about to hit us out of nowhere.

Honestly, I’m so tired of new issues (and the trach) that I could scream. We just want to get this resolved as soon as possible so we can get on with our lives. Please pray with us that whatever this issue is, it can be resolved easily and swiftly and result in Luke’s decanulation, if not July 18, then sometime by the end of the summer. It will be very tough for us if we have to wait yet another year for Luke’s decanulation.

We also are working on resolving a few (relatively) minor problems with other systems in Luke’s body. In January, Luke’s neurologist referred us to a pediatric ophthalmologist because she thought she saw the beginnings of a lazy eye. We visited the ophthalmologist this morning who had no concerns of that nature, but referred us to somewhere called the Retina Clinic to check out the slight nystagmus lingering from Luke’s hyponatremia (very low sodium level) last spring. It’s imperceptible to us, so we’re not extremely concerned about this issue right now. I’m relieved and thankful that we won’t have to deal with the headache of patching Luke’s eye to treat a lazy eye condition.

We’re visiting a dentist tomorrow because it seems one of Luke’s lower molars seems to be growing in sideways. It doesn’t seem to be causing him discomfort, but we don’t know how big of a deal to make of it. So we’re seeing a dentist tomorrow.

Finally, after Luke’s last broncoscopy, I noticed the top knuckle on his left thumb doesn’t bend at all. It’s fixed, and I can’t straighten it by applying pressure (as much as I dare). I’m working on scheduling an appointment with an orthopedist to work on this problem.

Besides working on the cap, Luke is doing great. He now weighs about 25½ lbs. and is 35 in. tall. He’s been walking since just before his second birthday. He’s now walking everywhere he goes and can stand up on his own about 30% of the time. He loves to climb. His favorite activities include playing with Legos and opening and closing doors and drawers. He loves letters and words. Whenever he sees any kind of animal he enthusiastically signs “Cat”. He loves making friends, singing “Itsy Bitsy Spider”, and taking a bath. He still tastes everything. He loves to throw things.

Listing these stats gives me joy and lifts my mood. But honestly, most of the time lately I feel very discouraged. I make every attempt to count my blessings and give my discouragement to God to take care of, but it’s difficult after fighting these battles for so long. I’m aware that there are people out there who have dealt with medical problems even bigger than Luke’s for much longer. But standing here in the middle of it, it usually seems insurmountable. It feels like we’re never going to get this trach out. I’m tired of getting my hopes raised only to have them crash down once again. I’m scared to hope any more. I’m weary of dealing with the medical system.

We’ll keep plugging along though. God’s grace is sufficient for us. More than anything, I want God’s timing. We need patience and endurance from him to get us through these next days, weeks, months, and years. Thank you for praying with us and for us. Thank you for your words of encouragement. For those of you who deal with us in person, thank you for your patience as we figure out how to raise this very special toddler. Our biggest prayer is that any who encounter our family see the One who loves and sustains us.

Blessings,

Rachael, David, and Luke

Sunday

2011-07-03T22:22:00.002-05:00

Luke did 8 hours with the cap today. It's seems to be getting easier for him, but he's still not able to sleep with the cap on. Still having a hard time going to sleep and sleeping for more than 30-40 min with the PMV/cap hybrid. Praying we get him comfortable enough with the cap to complete and pass the sleep study Friday night.

Friday

2011-07-01T18:52:00.002-05:00

Luke did 6 hours with the cap today. Talked to the doc b/c we're meeting more resistance than we expected. He says that Luke must wear the cap comfortably all day or there's no point in doing a sleep study. Good news is that even if we don't make the 7/18 deadline, there's still lots of summer left to decanulate. We'd love to have your prayers to get his trach out on the original date.

Tuesday

2011-06-28T12:40:00.002-05:00

It was a really big battle, but I just got Luke to fall asleep with his PMV/cap hybrid on. All his crying broke my heart, but with some Mamma love, he finally dropped off. Satting 80%. This is a big step for him, and gives us confidence that maybe he can pass his sleep study next Friday.

Monday

2011-06-20T15:44:00.000-05:00

approx 3:35 pm

Luke is awake, playing and doing well. They decided to keep him overnight after all just to be safe. We'll go home first thing in the morning.
********************

approx 12:45 pm

Luke's out of surgery. Doc removed more granulation tissue. There is some scarring on the vocal chords, but it shouldn't hold us back from decanulation July 18.
********************

approx 11:45 am

Just took Luke back to the OR
*********************

approx 10:45 am

Waiting to send Luke back to the OR for his 9th broncoscopy

Friday

2011-06-10T14:52:00.002-05:00

Not bragging or anything...well, I guess I'm bragging... Luke's been wearing his cap for 30 minutes so far, with brief pauses for suctioning and we've gotten it right back on. We're going to see how long he can go. We are SO EXCITED!

HALLELUJAH!

2011-06-09T11:40:00.005-05:00

WE CAPPED HIM!!!!!!

Wednesday Night

2011-06-09T11:40:00.002-05:00

Over the past two years, I have become impervious to manipulation by Luke's voiceless cry. Of course I would never ignore him if something is wrong. But now that Luke has a voice, approaching the true sound of that a normal child makes, my heart melts every time that little boy utters a sound. When he cries, I want to cry, laugh, and cheer all at the same time. I'm afraid I'll never say no to him again!

Wednesday

2011-06-08T09:26:00.000-05:00

We are now able to use Luke's speaking valve again, and it's amazing to hear his voice after not hearing it for so long. He's doing great! Thank you for your prayers. Now we need you all to pray that he will tolerate us capping his trach tomorrow.

Monday

2011-06-06T09:23:00.005-05:00

{approx 7:30 pm}

Waiting on a last dose of IV steroids at 8:00 before we can get home. Then, we'll all be sleeping in our own beds, praise God!

**********************************
{approx 3 pm}

Luke is awake and doing well. Cries every time he coughs because his throat hurts. Poor guy. :( Plan is to go home this evening around 6 or 7 if we don't encounter any problems between here and there.

**********************************
{approx 11 am}

Luke's out of surgery. Did great. Sats and heart rate are acceptable. Doc removed granulation tissue. Probably staying overnight.

**********************************
{approx 9 am}

They took Luke back to the OR at 9:00. Should be about an hour and a half. He'll recover in the cardiac ICU. Don't know if we'll stay overnight or not.

Fun with Paint

2011-05-26T15:38:00.000-05:00

Luke's 2nd Birthday

2011-05-23T10:03:00.000-05:00

*photos courtesy of Aunt Rebekah

Airway Reconstruction

2011-05-23T10:02:00.000-05:00

I apologize for having not posted sooner after Luke got out of the hospital, but we have been so busy getting back into the swing of things back at home and work, that I haven’t had any time to sit and write. Bottom line is that Luke is home, safe and sound, and we’re counting the days to our next surgery and ultimately decanulation.

On Saturday before his surgery, we celebrated Luke’s 2nd year with a small party at our house with our family, closest friends, and two of Luke’s nurses. As we had started hoping months ago, Luke was indeed walking at his party, and all of our guests were so excited to see him toddling around. He was a great host until we sang the Happy Birthday song about two hours into the party. Luke waited until we finished singing, then burst into tears. Loud voices still bother him when he’s tired, no matter how cheerful. All in all it was a great celebration.

Monday, May 9, we got up extremely early to take Luke to Children’s downtown. We did the normal pre-op stuff, and they took Luke back to the OR around 8:00. This time Luke was crying as they rolled him down the hall away from his parents, which did not make it easy for mom and dad. We got updates about every hour, and the surgery was over in about four and a half hours. Dr. McClay told us that everything had gone as planned. He told us that Luke had two incisions, with a drainage tube at each incision. We were very concerned that we wouldn’t be able to keep Luke from pulling at the tubes once he woke up from anesthesia.

We finally got to go back and see him in his Cardiac ICU room about 1:30. He certainly didn’t look his worst, but his state post surgery still reminded me of that awful moment we first saw him after his first heart surgery at four weeks old. He was very still, and had that clear post-op goop in his eyes. He smelled exactly like he had just come from the OR. I had to keep reminding myself in those difficult moments that he was warm, his o2 sats were great, and his heart rhythm was stable (praise God!). It was a pretty rough afternoon for all of us, and I cried a lot.

Our worries about Luke pulling on his drainage tubes and IVs were unfounded. He slept the majority of the next three days. Plus he couldn’t access either of his drains because they were completely covered with dressings. Before surgery, I had loaded up Luke’s birthday present table with things he could do in his hospital bed. Poor Luke was in a lot of pain, and zonked out most of the time because of the Tylenol with Codeine. Anytime he woke up he either wanted to watch TV or for one of us to read his favorite book (we read it so many times to him that both David and I have it memorized and can now “read” it to him from across the room). Besides managing Luke’s pain, our biggest struggle over the next three days and three nights was suctioning. The first four shifts, the nursing staff would not allow us to suction Luke like we have been at home. Luke’s secretions have increased drastically since surgery, and it was extremely frustrating having to call a nurse to Luke’s bedside every five minutes (I mean that literally).

On Luke’s actual birthday, he had a rough wake up call, as the ENT surgeons (McClay has a fellow that assisted with Luke’s surgery and made rounds with him afterward) came in early in the morning and removed his drains. The rest of the day went without incident, and we got to celebrate Luke’s birthday with our best friends the Trischittis and some fabulous home-made cupcakes.

Thursday afternoon, we took Luke down for his first-ever swallow study. During the surgery, Dr. McClay placed a stint in Luke’s upper airway. The stint makes it so the part that is supposed to close over his airway when he swallows (epiglottis) stays open. That means that Luke is at risk for everything he swallows going down his airway (aspiration). Dr. McClay explained that most kids aspirate, but some kids can figure out how not to aspirate. The swallow study revealed that Luke is aspirating everything: water and puree. This means that for as long as he has the stint, Luke can only have clear water by mouth once a day to keep his swallowing skills sharp. After the swallow study, the amount of suctioning we’ve been doing started to make sense: we realized he’s been aspirating his saliva every time he swallows. Unfortunately, that means we’re going to be suctioning a lot more frequently for the duration of the time Luke has his stint in.

Our ENT surgeons rounded again Thursday evening to talk with us about the results of the swallow study. We were prepared to spend one more night in the ICU and then go home on Friday, but our wonderful nurse asked McClay if we could go home that evening. He didn’t see any reason why not, so we rolled out of there at about 6:30 Thursday evening. I think Luke holds the record for the amount of times a kid has been discharged to home straight from the ICU.

Since we’ve been home we’ve dealt with a lot of pain and fussiness. Luke surprised us Friday morning by reaching for his Daddy to get him out of his crib and take him to the living room. He was really unstable on his feet the first few days home, but he’s gotten a lot stronger in the past few days. He’s still not 100%, but quickly approaching it.

We had a scare Tuesday night when we found a blood stain on his mattress in the middle of the night. We finally figured out that he wasn’t bleeding from his trach. I rocked him and gave him some Tylenol, after which he seemed pretty normal, so we decided not to take him to the ER. I was able to present my concerns to Dr. McClay at Luke’s follow up appointment Wednesday. The doctor said that the stint he placed tends to rub up against the epiglottis and irritate it. Bleeding is not uncommon, and we can expect it to happen intermittently for as long as the stint is in. I was also concerned that Luke hasn’t vocalized since his surgery, and not for lack of trying. Dr. McClay again said that is normal, as the stint is placed between his vocal chords. I guess I have to wait to hear that baby voice until June. Additionally, we’re not to try to cap him or use the Passy-Muir until after the stint comes out.

Last night we had another scare. I was gone for “girls night out” with some friends while David kept Luke at home. On my way home David called and told me that Luke had been bleeding from his mouth, way more than we should expect from the epiglottis irritation we now know to expect. When I got home, Luke was still bleeding profusely from his mouth, and we were suctioning blood from his trach. We couldn’t tell where the blood was coming from, so we were forced to assume that something had gone wrong with Luke’s stint. We loaded him up about 7:00pm and headed to Children’s ICU. He bled the whole way there. We were able to get in right away, a baby dripping blood from his mouth gets people’s attention. After some thorough examination, the ER docs found that Luke had somehow fallen and cut the skin inside the mouth where it connects the lip to the gums (frenulum). Mouth wounds bleed a lot anyway, but add to it Luke’s Aspirin regimen, and you get a recipe for a lot of blood. The ENT on call sent a scope down Luke’s trach and his nose to check the placement of the stint anyway, and everything looked perfect. We were so relieved to find out that it was such a minor injury. They wanted to keep him over night for observation, but when they found out we have home health nursing available, they let us take Luke home only two and a half hours after we walked in the door. Everyone was so nice, we really appreciated how they treated our family.

The worst part of the LTR process is over, so now we’re in holding pattern until we’re ready for the next step. On June 6, Luke will have another broncoscopy in which Dr. McClay will remove the stint. That will be an overnight stay in the cardiac ICU. At that time we can start trying to use the Passy-Muir. Once he tolerates that all day, we can try to cap him. We can also return to full force with Luke’s oral feeding trials. The hope is that once he figures out that it’s safe to swallow again, his eating skills will improve dramatically because he has a much bigger airway, and swallowing food will be much more comfortable. On June 20, Luke will go in for another broncoscopy for the doctor to check for scarring and make sure everything is healing correctly. That will be another overnight stay in the cardiac ICU. On June 25, Luke will have a sleep study to see if he’s able to breathe with his cap on his trach through the night. I particularly need your prayers for this one. Luke’s only other sleep study was particularly hard on him, and it was hard for his Daddy to watch. Since the sleep study is on a Saturday night – Sunday morning, it’s Mamma’s turn to be with Luke through the sleep study. I need peace and fortitude to help Luke get through this necessary step in the process. If all the previous steps in the process go as planned, Luke will go in for a final broncoscopy and trach removal on July 18. That should be the final step, and Luke should come out of that OR a trach-free kid!

We thank you all for your continual prayers. We ask you that you pray for the next few weeks that Luke will stay healthy, that we as his parents have endurance to get to the finish line, and that we don’t have any more emergencies between now and decanulation. We love you all and praise God for your presence in our lives.

Blessings,

Rachael, David, and Luke

Thursday

2011-05-12T13:49:00.000-05:00

We had a better day yesterday, and today Luke is continuing to improve. Still sleeping a lot and managing pain. Swallow study today at 1:00. Pending those results, we'll head back home tonight or tomorrow. Thanks for your prayers

T-W-O

2011-05-11T09:56:00.000-05:00

Wednesday

2011-05-11T09:39:00.002-05:00

Luke had a pretty good night. Awesome nurse who stayed on top of his suctioning so he could rest. Already got the drains out from his neck and side early this morning. Found out he's still on a little o2 (I thought he was off, but he wasn't). Swallow study some time today. Happy Birthday Sweet Baby Boy!

Tuesday

2011-05-10T12:56:00.003-05:00

{approx 9:45 pm}

The last half of today has been rough. Lost an IV. Copious secretions that the nursing staff will not let us suction. It is so frustrating to be perfectly capable of caring for his trach with our hands tied by the nursing staff so we have to beg them to come suction him every 5 minutes +. Got some more morphine on board, so hopefully we can all rest a little tonight.

*****************************************************************

Luke is doing better today. He was awake for awhile this morning. He's still in pain, but he keeps signing "more! more!" when we read to him. I even got to see a little smile today. They took his foley out this morning, he's off of oxygen, and the doc just said they're going to take him off the vent now. He's had a full feeding and tolerated it well. Thanks for your prayers!

Monday

2011-05-09T08:17:00.004-05:00

{approx 2 pm}

Luke's out of surgery. He's getting situated in his ICU room, haven't seen him yet. Doc says he did great, did what he set out to do, is hopeful about recovery time being 4-5 days.

********************
{approx 12 pm}

Luke is still doing well. We expect him to be out of surgery in a half hour or so.

******************

{approx 11 am}

Doc just finished getting the cartilage graft. Now he's going into the airway. Luke's doing well so far.

********************
{approx 8 am-ish}

IV lines are in. Doc started the cartilage graft. Luke's doing well so far

********************
{approx 8 am}

They just took Luke back to the OR. We should get an update every hour or so throughout this four hour long surgery.

Monday

2011-05-02T16:43:00.002-05:00

Thanks all for your prayers and concerns. Whatever it was that was lowering Luke's o2 sats seems to be gone now. He seems to have returned to baseline as of last night. I'm still keeping him home from church on Mother's Day to reduce risk of infection before the big day in one week!

Friday (4/29/11)

2011-04-29T12:46:00.002-05:00

Please pray for Luke. His o2 sats are somewhat lower than normal while he's resting. It's been a lowering trend over the past several nights. We hope its the barometric pressure that's affecting his breathing (he's a "weather baby"), but there's always fear of infection. We're waiting on a plan of action from his pulmonologist. Please pray that he can stay infection free and get his LTR surgery next Monday.

On the Road (to the hospital) Again...

2011-04-20T17:55:00.000-05:00

Well, surgery season has begun. Luke went in for his fifth broncoscopy on Monday, April 11. This is where the ENT (Ear, Nose, Throat) surgeon sends a camera down Luke’s airway to check the status of the airway tissue. Just like the last one, we took Luke to Dallas Children’s Medical Center, and Dr. McClay was the surgeon.

Luke is continually getting bigger and stronger. He got through this procedure with flying colors. As a family we are getting to be much practiced at pre-op appointments, the questions to ask the anesthesiologist, and going to the hospital with a hungry baby. This time around my parents came to be with us, so we had two extra pairs of hands to help with Luke. Everything went extremely smoothly. The nurses came and took Luke to the OR about an hour before I anticipated they would. As she carried him beyond the doors, Luke spiritedly grabbed the nurse’s glasses and threw them (somebody’s mamma ought to discipline that kid!). It felt comforting to know that Luke wasn’t upset or worried, just ready to play.

We sat down in the waiting room and about 45 minutes later, the lady at the desk called me and David over. I was thinking “Oh, the anesthesiologist got the IV line in, and they want to tell us that they are now starting the procedure.” Nope. She called us over to tell us Luke was headed to recovery and we were to go to the conference room to talk to Dr. McClay. I was astounded. Nobody had ever gotten in a line in Luke so quickly, much less done an entire broncoscopy.

We had hoped and asked everybody to pray that Luke’s airway tissue would be hard and that the doctor would be able to just expand the airway by lasering out some tissue. Evidently this wasn’t the case. Dr. McClay decided the best course of action at this point is to go ahead with the airway reconstruction (LTR = Laryngotracheal Resection). When we met up with Dr. McClay, we learned why the procedure itself was so fast. As I had guessed, Luke had built up a significant amount of granulation tissue to obstruct his airway again. Since he’s going back in for the LTR May 9 and Luke had only been off of asprin for a few days, he decided to leave the granulation tissue for now and remove it during the LTR.

We got to see Luke about 45 minutes after he went to recovery. In about half an hour from our arrival, we had already weaned Luke off of oxygen completely. Again, we were amazed. Even during Luke’s last bronc in November, it had taken him several hours to wean off oxygen, and he was desatting with every suction. This time, his sats weren’t going below normal range at all with suctioning. At about 12:30, we moved Luke up to the Cardiac ICU to finish recovering. At about 3:00 we were finally able to give Luke some Pedialyte through his g-tube. When it was evident he was tolerant of clear fluids, we were allowed to give him formula. Discharge came very quickly after that, and we were home by 5:30. I don’t think the day could have gone smoother.

While we were a little disappointed that Dr. McClay wasn’t able to laser out the tissue during the bronc and fix his airway then and there, we were really expecting to have to go the LTR route. So we are planning to take Luke in for major surgery May 9th. We are expecting a four hour long procedure followed by a 2-4 day stay in the Cardiac ICU followed by a 3-5 day stay on the inpatient floor. Spending the day in the hospital made us realize how difficult LTR week is going to be. It only took a few hours post-op for Luke to feel fairly normal. It was so difficult to keep Luke contained in that hospital crib! Luke had attached to him three leads, an IV, a pulse ox, and a blood pressure cuff. By the end of the afternoon, everything was just a big mass of tangled tubes and wires. We were exhausted after one afternoon of trying to keep Luke from pulling everything off and out (including his trach!). We are definitely going to need prayers for stamina as we help Luke recover in the hospital for a whole week.

So after a long (and heated) discussion with Dr. McClay’s surgery scheduler yesterday and another conversation with his nurse today, here’s the run down of road to Luke’s decanulation: May 9th, we’ll do the LTR with about a week’s stay in the hospital post-op. We will have another bronc June 6th to take the stint out that Dr. McClay will have placed during the LTR. This procedure requires a 23 hour observation, so we’ll stay at the hospital overnight for this one. On June 20th we’ll have another broncoscopy to check for scarring, and if all goes well we’ll go home that same day. On June 25th, Luke will stay overnight for a sleep study to see how he does at night breathing with his trach vs. breathing without it. Finally, on July 18th, we’ll do the (hopefully) last bronc to make sure everything has gone as planned. If it has, we should be able to expect that Luke will return from that OR trach-free!

I need to take this opportunity to tell you just how difficult having a toddler with a trach is becoming. Thursday after the bronc, I was home alone all day with Luke. I had been fighting with him all day about trying to keep his HME (heat/moisture exchanger) on his trach. Finally he pulled it off, but I heard a different sound. It sounded like it does when Luke pulls and pulls and finally works a hole in the external part of the trach (not life threatening). So I took my time picking him up and carrying him to the couch to check it out. Then when I looked at it, I realized Luke had stretched the trach and pulled the inner part of the trach out of his throat, and it was resting against his neck, still attached with the ties. By then it was getting more difficult for Luke to breathe (remember he has a very narrow airway that is partially obstructed by granulation tissue). I took the ties off, and for some reason felt like I needed to carry him to his room to put the trach back in (I’m still kicking myself for the time this cost him!). I tried and tried to get that trach back in, but by that time, Luke was panicking, clawing at his airway and flailing around. Without lubrication or the metal rod that goes in the trach to make it firm for insertion, I couldn’t get the trach in at all. Finally, I got a fresh trach with the metal rod already in it, but even then it took me several attempts. The whole time I was just praying “God, do not let this baby die now!” Finally I was able to pin Luke’s arms behind him and get the trach in. I have no idea how long it took me, but my baby was pretty blue by the time I was able to get the trach back in safely. For a long time afterward I just held him and rocked him and we both sobbed our eyes out. We need your prayers that we won’t have any more emergencies like that. I need for Luke to keep his trach in until his LTR and his airway is open enough for him to breathe safely even if he pulls his trach out accidently.

Dr. McClay explained that 90% of his kids that go through the LTR surgery and decanulation process do so as expected without any problems. About 10% of the kids have issues with scarring, preventing decanulation. I don’t know what happens if Luke is part of the 10%. We’ll cross that bridge if we get there. We would love for you to pray that from here to decanulation, everything goes just as smoothly as the last broncoscopy did. We ask you to pray for no surprises, no hang-ups, no illness or infection, and no new issues. Another new issue or missing our summer decanulation “window” again would devastate us. We are literally counting down the days to no more trach changes, trach care, constant suctioning, or nursing. We ask that you pray simply that this time decanulation will be a reality instead of just a really great dream.

Thank you, as always for your continual prayers and words of encouragement. We are so blessed to share this journey with you, our brothers and sisters in Christ. We look forward to the day when we can announce that we’ve put trachs, surgeries, and hospitals behind us.

Blessings,

Rachael, David, and Luke

Thursday

2011-04-09T14:18:00.002-05:00

I'm a little emotional. Luke's respiratory therapist just came and took away his ventilator and oxygen concentrator and all the attachments. Even though he hasn't used either since last June, it's still surreal to see it leaving our home and family forever. Thank you everyone for your prayers that have gotten us to this point!

Graduation

2011-04-01T08:05:00.000-05:00

Luke has made a medical milestone, so I wanted to share our joy (and relief!) with everyone before surgery season begins in a week and a half.

Tuesday we took Luke to his dreaded Vent Clinic appointment. Why is it dreaded? It’s kind of like a one-stop-shop for getting x-rays, blood work, seeing a dietician, getting medical supplies ordered, and of course seeing the pulmonologist. It’s great to get all of that done in one appointment, but it can take anywhere from 3-6 hours from arriving to leaving, not to mention our 45 minute drive both ways. So you sit in a room with a crib, a TV and two chairs, with only a curtain separating you from the rest of the busy, very noisy vent clinic, hearing all the other patients’ crying, vents, suction machines, and alarms. Plus, they always do blood work to check Luke’s blood gas and electrolyte levels to avoid an issue with his sodium. Any time we do blood work with Luke, it’s anybody’s guess how many times they’ll have to stick him before they get a good draw. The inside of my baby’s elbows are all scars from the cut downs he’s had during his hospitalizations.

This vent clinic wasn’t too terrible as far as time goes. We were out of there in three and a half hours. The blood work was the worst. Luke got stuck four times before they got enough blood to run the tests they needed. David and I both would have said “three strikes and your out” if we weren’t both so paranoid about his sodium level. We NEVER want to deal with that again. So fourth time was a charm, and sodium level came out perfect. Blood gas was stupendous. Poor Luke crashed against his Mamma as soon as they got the needle out of his arm and he calmed down a bit.

We saw Dr. Copenhaver who was really impressed with all of Luke’s numbers. Luke is meeting his growth/weight goals, so that’s a relief too. The doctor is so comfortable with what Luke is doing medically, that he’s ordered our Medical Supply company (DME) to remove the ventilator and oxygen concentrator from our home. Luke hasn’t used either of those pieces of equipment in 9 months or so, but we still had to keep them around in case of an emergency. Any time we get to get rid of a piece of medical equipment is a celebration. So we’re getting rid of the vent and oxygen concentrator for good. We’ll still keep a few oxygen tanks around, just in case.

The biggest deal for us though, is that we no longer have to attend vent clinic. Luke is doing so well that he can now graduate to just seeing the pulmonologist in his office, which is at Medical City (no vent = no vent clinic!). We will continue to see a dietician at the same office where Luke receives physical therapy (Our Children’s House at Rockwall). David and I are cheering that we don’t have to go to Our Children’s House at Baylor anymore as far as we can see. This is a big day for our family!

Now that we have vent clinic behind us, we are looking forward to a few weeks from now. April 11th will be huge for us. Luke will go in to have a broncoscopy (camera down his airway) done by our new ENT, Dr. McClay. The results of this procedure are very critical. To our simplified understanding, we have been waiting for Luke’s airway tissue to mature. It can form/mature one of two ways: hard or soft. If during the broncoscopy, Dr. McClay finds that the tissue has matured enough and has formed hard, he should be able to laser out enough tissue to open up Luke’s airway, making it so he no longer needs the trach. If this is the case, we don’t know how long after this procedure until decanulation (trach removal), but we’re hoping not too long, maybe a matter of weeks. The more likely scenario is that the tissue will be soft. If that is the case, Luke will undergo an LTR (Laryngotracheal Resection = airway reconstruction) May 9th. Dr. McClay will take cartilage from Luke’s ribs and use it to restructure his airway, making it open enough for Luke to breathe without a trach. If this is the route we have to go, the current timeline we have from Dr. McClay is decanulation mid July.

We would like to ask everyone to send your praises up to our Father for this milestone Luke has achieved by graduating from vent clinic. We also ask you to remember April 11th in your prayers. We ask that God would prepare the quickest, simplest, and smoothest way for Luke to get his trach out. I think I would fall over with joy if I got to take Luke to the zoo for his birthday with no trach, no suction bag, and no emergency supplies. I would love to take Luke swimming this summer. As always, we ask you to pray for Luke’s parents that we are able to accept whatever verdict comes from April 11th’s procedure and beyond.

Thank you all for your faithfulness in prayer and in encouraging us. We are so grateful for all that you do!

Love,

Rachael, David, and Luke

Wednesday

2011-02-23T13:30:00.002-06:00

Luke got his "SureStep" orthotics today. It's been a little harder to find shoes that fit over them than I thought. Found some cute ones, and Luke's stability is already improving when he wears them. Not happy about more plastic attached to our son, but happy it should help.

To Appease the Masses :)

2011-02-12T21:17:00.000-06:00

Our Faith Journey (so far...)

2011-02-12T21:05:00.000-06:00

Today I spoke for the first time for the public about our faith journey with our son Luke's illness. I wanted to post the manuscript of my speech. For those of you who don't know our story, it's a good shortened version of the details of our story.

Our Faith Journey

As I began writing down what I was going to say today, I sat at my computer in the living room surrounded by my son and his toys. It’s easy to let my mind wander down the road where my family has walked in the last two years. How much easier would it have been if on the first step of that journey, we could have seen today—with Luke crawling all over the living room, not attached to any equipment, stopping every few minutes to raise his arms to ask to be picked up? It probably would have been a lot easier, but at the cost of my husband and me not developing the quality of faith we now enjoy. Hebrews 11:1 says “Now faith is confidence in what we hope for and assurance about what we do not see.” That’s exactly it. Today I want to tell you the story of the faith journey that we have taken through our son’s illness, and to tell you what we knew for sure, even when it was so dark we couldn’t see our hands in front of our faces.

I want to tell you Luke’s story, and then I want to spend some time on a particularly big moment for us. My husband, David, and I began praying for Luke long before he was born. We prayed for God’s perfect timing in the birth of our first child. We waited a few months, and then we were thrilled to discover that I was pregnant. Even though I was sick for most of my pregnancy, those first few months were blissful emotionally.

At 17 weeks of pregnancy, the bottom fell out of our world. My OB-GYN scheduled a level-two sonogram with a maternal fetal specialist just as a precaution, because I was born with a heart defect, and we wanted to make sure our baby was healthy. The chance of the baby having a birth defect was less than 1%, and we were simply looking forward to finding out whether to paint the nursery pink or blue. When we visited the specialist, we were overjoyed to find out that we were going to have a baby boy. The excitement rapidly disappeared when the doctor came in and told us something was wrong with the baby’s heart. Half an hour later found us in the office of Dr. Jane Kao, a fetal cardiologist. She gave us the bad news: Our son has a heart defect known as Ebstein’s Anomaly. One of the valves in his heart did not form correctly. It was causing blood to regurgitate into one of his heart chambers, making it so his heart was expanding like a water balloon. She explained that he had about a 75% chance of making it to birth. She told us that when he was born, we would have to go through a three-surgery process to reroute the blood through his heart to make it work effectively. She told us the surgeries would basically shut down half of his heart; blood would pump through two chambers instead of four. She told us after all of his surgeries, he should be a pretty normal kid, although he probably won’t be able to do competitive athletics. She told us that any time you shut down half of a person’s heart, the need for a transplant is always a possibility down the road.

That night, we began blogging about our journey, asking everyone to pray for our precious son. And we waited. We had lots of ups and downs through the rest of the pregnancy. One specialist flippantly dismissed the possibility of our son even making it to birth. He had never seen a baby as sick as our son was make it to the point where he could survive outside the womb. As we waited for either a miscarriage or the birth of our son, we settled on a name for him. We chose the name Lucas. We liked how solid and strong the name sounded. Lucas means “bringer of light.” We had faith that no matter what happened with our son, he was going to light up our lives and bring us joy.

The first of our miracles happened during my pregnancy. While he was in my womb, Luke had a condition called hydropse. Fluid was building up around his heart. The fear was that the fluid would become too much and would begin to crush his heart, causing him to go into cardiac failure. This was the primary cause for our fear of miscarriage. Through our blog and church contacts, we asked everyone to pray that God would allow our baby to make it to viability, the point where he could survive outside the womb. The doctors said we needed to get to at least 26 weeks gestation to give Luke a chance at survival. As the weeks ticked past, we found that the fluid was not increasing, even more incredibly, by the time we hit 32 weeks or so, the fluid had disappeared. We were amazed at this first very real answer to prayer. It bolstered our hope even more to find out that the results of the genetic testing we had done revealed Luke was at no increased risk for fetal syndromes like Down’s Syndrome. We finally began to believe for the first time that we were really going to have a baby.

Luke’s birthday was an amazing day. While we were concerned during my pregnancy that we would have to deliver Luke dangerously early to repair his heart, we were able to put off his birth week after week. Finally, at 38 weeks, the maternal fetal specialist discerned that Luke had quit growing, and that he would grow much better outside the womb once we could get his heart repaired. We were amazed that Luke made it to full term. We had to deliver him C-section because he was not tolerating labor well at all. He was born the evening after Mother’s Day. I was not able to hold him before they whisked him away to the ICU, although I got to give him some kisses. That night they put him on a ventilator. While his heart problems were very evident, they were having a difficult time understanding why he was having so much trouble keeping his blood oxygen at an acceptable level. A CT scan done his second week of life revealed that Luke was only using 2/3 of one lung. The other 1 and 1/3 of his lungs had not ever inflated. Luke’s heart was so large due to his heart defect that it had crushed his lungs. The lung tissue was there, the doctors just weren’t sure if it would be able to inflate. We were unprepared for the severity of Luke’s lung issues. We asked our prayer warriors to pray that God would somehow inflate Luke’s lungs. Just a few days later, Luke’s oxygen saturations began to improve. The doctors never told us that they thought Luke’s lung had inflated, but David and I were confident that we had seen another miracle. By the time of Luke’s first heart surgery, four weeks after his birth, the surgeon reported that both lungs were inflated and moving air.

The day of Luke’s first surgery marked the beginning of the darkest days that we’ve ever experienced. It would be hard for me to tell you in the time I have today just how difficult the next sixteen weeks were for us. Luke’s surgery was successful in making the first and most complex repair on Luke’s heart. However, even during surgery, Luke started to struggle with heart rhythm. On the elevator going up to the ICU for recovery, his heart arrested for 27 minutes. It was a miracle that his heart surgeon was in the next room preparing for his next patient when this happened, because he was able to save Luke’s life. They put Luke on a machine that did the total work of his heart and lungs for two days allowing his heart to rest and heal from surgery. After two days, Luke developed bleeding into his brain, which meant that ready or not, we had to take Luke off the heart/lung machine. This was a very critical time for us. Luke’s heart either had to take over the work for the machine, or he would die.

Luke survived, but the combination of the cardiac arrest and the use of the heart/lung machine tipped over the first domino in a long chain of problems. We discovered that Luke had stopped making urine, and his kidneys stopped regulating his electrolyte levels. The doctors told us that Luke had gone into kidney failure, and we were forced to put him on dialysis. Then x-rays started showing that Luke’s intestines were no longer processing and absorbing food. For weeks we waited for Luke to digest food. The morning after Luke had gotten off the heart/lung machine, he started having seizures, and we were very fearful of brain damage. Soon after that, Luke’s heart went into a stubborn arrhythmia which showed no improvement with medication. These events happened one right after the other, so it felt like a train hit us every time we were able to rally our strength to face another issue. It really seemed like every morning when we arrived at the hospital, something else had gone tragically wrong over night. Any one of these things by itself would land a baby in Intensive Care, but we were dealing with all of them at once. We spent 11 weeks on the Congenital Heart Surgery Unit while our doctors brought him out of his organ failure, fought off multiple infections, and got his heart rhythm under control.

All during this time, Luke had been on a ventilator. Several times we worked on weaning him off of the vent, but each organ failure and each new infection knocked us back weeks on that front. Finally Luke was stable enough for them to try to take him off the ventilator completely and try breathing on his own for the first time since the day of his birth. He failed each trial they put him through to try and breathe on his own. After a few weeks of this, one of our doctors suggested that an Ear Nose and Throat specialist look down Luke’s airway to check for problems. We got bad news once again. Luke’s heart had been so huge from the defect that it squashed not only his lungs, but also his bronchial tubes and trachea. The airway tissue was floppy and would not stay open for Luke to breathe without the positive pressure of the ventilator. We then were faced with two choices. We could either let Luke continue to stay in the hospital for weeks, months, or even years while his airway strengthened and hardened enough to let him breathe without a ventilator, or we could choose to have a tracheostomy done on Luke and go home with a trach and a ventilator. For those of you who have never seen a trach before, it’s a plastic tube inserted into a hole in the throat. It allows the person to bypass breathing through the nose and mouth. In Luke’s case it decreased the negative pressure on his lungs, allowing him to breathe much easier.

We were so discouraged at this point. After months in the hospital, we had been so eager for the day we would hear that we could take him home and leave the hospital nightmare behind us. Taking Luke home with a trach and a ventilator was a pill we almost couldn’t swallow. We rallied our prayer warriors again, asking them to pray for God to miraculously heal Luke’s airway, just as he had inflated Luke’s lung. Another week went by and Luke’s breathing did not improve. We felt that our only option was to go ahead with the tracheostomy. When Luke was almost 3 months old, he got his trach. At the same time, the doctor placed a permanent feeding tube in Luke’s stomach so we wouldn’t have to wait for Luke to learn to eat before we could leave the hospital.

Our next step was Luke’s five-week stay at Our Children’s House at Baylor while we learned to take care of our son and while Luke’s Medicaid was approved to pay for all the equipment and services he would need at home. This was a big adjustment for our family. When we were in the ICU, at the most, Luke shared his nurse with one other patient. He received almost constant attention, and we were usually confident to leave Luke with his nurses and go home each night. At Baylor, it was a big change for the nurses to cover several patients at once and to remain down the hall unless they were paged. Luke still needed constant attention, so his parents took over. Since one of us needed to stay with Luke around the clock, the other one of us was either working or sleeping. David and I hardly saw each other during the week. Our parents were so helpful in staying overnight with Luke on the weekends so David and I could spend a little time together. Although we had some visitors, I think back on that as the loneliest time in my life.

Finally, on Sept 29, the day came when we got to take Luke home for the first time. He was four and a half months old. It took awhile to get adjusted to having Luke home along with all of his medical equipment and supplies and the 24-hour home nursing. We were used to having no privacy during the day at the hospital, but it was a big change having a relative stranger in our house around the clock. We began to settle into a routine though, with feeding therapy, occupational therapy, and at least one doctor’s appointment each week. Luke was making progress in most areas. By Christmas time, he was only using the ventilator at night when he was sleeping.

In January, our cardiologist told us it was time to start gearing up for Luke’s second heart surgery. When Luke was 8 months old, we took him back to the hospital for a heart catheterization procedure. Luke had already had two of these during his first hospital stay. We needed another one to gain information for doctors to know what kind of surgery was required. We expected just an over-night stay for observation after the test, but Luke caught a very serious virus called CMV. Luke stayed in the ICU for 10 days and then they released him, much weaker than he was before. 24 hours after we got home, we turned around and went to the ER because Luke was still suffering from symptoms of the virus. That was our scariest trip to the hospital. Luke’s oxygen got so low that he was blue, and he started seizing. I had to give Luke oxygen and breaths with a resuscitation bag while David sped to the hospital. Luke was readmitted to the ICU for another 5 days.

Our cardiologist wanted to give Luke several weeks to fully recover for his next heart surgery, but by the beginning of February, it was evident that he couldn’t wait any longer. Luke returned to the ICU two weeks after his battle with CMV to await heart surgery. He was slated for surgery five days later. That weekend, we got another miracle. It became evident that Luke had another infection. The infection wasn’t the miracle, but finding out about it when we did was. If they had taken Luke down to the OR with a hidden infection brewing, he would have most probably died of complications after the surgery. For four weeks, we waited for Luke to be healed from pneumonia so he could have his surgery. He spent most of that time in an induced coma so he wouldn’t spend his much needed oxygen moving around unnecessarily. At one point, the doctors were concerned that they might have to put him back on the heart/lung machine because his heart was not working efficiently to give his body enough oxygen. We thankfully didn’t have to go down that route. Luke was finally able to have his surgery on March 1st. We were relieved to discover that almost all of Luke’s complications came before surgery this time. We were able to leave the hospital 10 days after his surgery.

Throughout the next week following our return home, Luke was sleeping almost all the time. He was very lethargic and fussy when he was awake. About a week after we got home, we called the physicians at the Medical City ICU to help us decipher his symptoms. We were worried that Luke had gotten too much of his pain medication, but by that evening, Luke was having muscle spasms and his eyes were rolling back into his head. We ended up taking him back to the ER in the middle of the night. We discovered that Luke’s sodium level was extremely low. We were told that if his sodium had dropped to that level quickly, he would have died. It was a miracle that he wasn’t having seizures. God was with us in that Luke’s sodium had dropped gradually over the course of the week. God gave us wisdom to help us decided to take Luke back to the hospital. Luke stayed in the ICU another 10 days while the doctors figured out that his diuretic medications were causing his body to dump sodium instead of absorb it. Once we understood that, we were able to adjust Luke’s diuretics and give him a sodium supplement. We took him home soon afterward.

I want to go back and spend a little time talking about what I think is the most amazing miracle we have witnessed concerning Luke’s health. Just after his first heart surgery, Luke began having heart-rhythm issues. His heart rate shot up to right around 200 beats per minute, and the rhythm was irregular. Remember, several of Luke’s organs had gone into failure due to his cardiac arrest and being on the heart/lung machine. This arrhythmia was constantly messing with his blood pressure and the way blood was delivered to the rest of his body. It was causing his organs to not be able to heal. For five weeks, Luke’s arrhythmia stumped the doctors. Nothing they tried could regulate his heart beat. The longer Luke remained in this state, the more worried our doctors became. They worried that his organs would not heal, and more systems would begin to fail.

They finally decided on three options. First, they maxed out two heart-regulating medications to try and budge the arrhythmia. These medications failed to do their job, as they had for weeks before. The second option was a new medication which could only be given orally. Although we tried to get Luke to absorb food through his stomach, his bowls were in failure, and he repeatedly rejected everything he was given. The new medication option failed us too, because Luke couldn’t absorb it at all. Our last option was a dangerous procedure called an oblation study. A doctor would send a wire into Luke’s heart, poke around and try to find whichever node was misfiring on Luke’s heart causing the arrhythmia. He would then burn the node so it wouldn’t work anymore, and the other nodes would tell the heart to beat correctly. This procedure is risky on adults, but it’s practically unheard of as an option for a baby as small as Luke was. We were told that the procedure had about as much of a chance of killing Luke than it did of solving the problem.

Once again, things looked extremely bleak for our family. We again called everyone to prayer, to ask God for another miracle. One night, when things were at their darkest, one of our favorite doctors came into Luke’s room. We were ready for a conversation about solving Luke’s problem, but instead, the doctor called us and the nurse to Luke’s bedside and announced that he was going to pray for Luke. All four of us laid hands on our precious baby as the doctor prayed. He acknowledged that they didn’t know how to heal Luke’s arrhythmia, but that he was confident that God knew. He asked God for wisdom for the doctors and healing for Luke.

We got our answer the next day. The doctors decided that Luke would go down for another heart catheterization, just to see what kind of damage Luke’s heart had from the long term arrhythmia and to see if they had missed any details of his condition that would lead to a solution. After the heart cath was over, the doctor who performed the procedure explained to us that he had accidentally bumped the heart wall. He assured us that Luke was okay, and in fact that his heart rate was currently in the 130s, down from the 200s, although he didn’t expect it to stay that way. When we returned to his room and met with Luke’s cardiologist, the doctors had discerned that Luke’s heart had converted to a rhythm that they could shock him out of, whereas shocking would not have affected the previous arrhythmia. David and I watched from outside the door as they yelled “Clear!” just like on TV and shocked our nine-week-old. When it was over, we knew we had received our miracle. The heart cath was not supposed to be corrective, but God used the mistake of a doctor to heal Luke’s arrhythmia.

So what about faith through this long journey? At times it seemed that we didn’t have any choices. We simply assented to whatever treatment the doctors presented to us. Sometimes it seemed much like a terrible train ride, where we just went where the track took us. Throughout my pregnancy, Luke’s birth, his lung and airway issues, surgery, organ failure, and arrhythmia, we prayed God would intervene and heal our son. We had faith though, we knew without a shadow of a doubt that God has been there, in control, the entire time. There’s a passage out of Daniel 3 in which King Nebuchadnezzar demands that Shadrach, Meshach, and Abednego bow down to his statute, or he would throw them into the fiery furnace. The three young men refused to bow down. They told Nebuchadnezzar that even if he threw them into the furnace, they knew that their God was able to rescue them. They said that even if God did not save them, they would not bow down to the statue. They would serve no god but their own. This story stands out to me as a summation of our resolve through Luke’s most trying times. We had strong faith in God’s unshakable mercy, love, and power. We knew that God was able to heal Luke completely, but even if he did not, even if he took our son from us, we have been able to say that we will serve no god but him.

So where are we now? About a month after Luke got home from the hospital after his battle with sodium issues in late March, he really started excelling. He was well enough to travel to Albuquerque for my sister’s wedding where our New Mexico prayer warriors got to meet him for the first time. At the end of June, we were finally able to wean Luke completely off the ventilator and regular oxygen. In July we were able to start Luke with intensive physical therapy twice a week. This past summer, Luke was not even able to sit up on his own or roll onto his tummy. Now he’s crawling and cruising, and getting closer every day to walking on his own. We’ve also made some serious progress with Luke’s eating. Learning to eat has been extremely slow and difficult for Luke. He has worked up to eating about 2 oz of yogurt every day.

Even though Luke was able to get off the ventilator completely in June, we have constantly battled with airway issues. Before we can get rid of his trach, Luke has to be able to breathe all the time with it capped. That just means that we cover the end of his trach, and Luke has to breathe in and out around the trach through his nose and mouth. In the last several months, Luke has had three broncoscopies in which the Ear Nose and Throat surgeon sends a camera down to look at Luke’s airway. The “floppiness” of his lower airway is resolved, but now we are facing soft tissue and a very narrow upper airway. This narrowness is stopping Luke from being able to breathe with his trach capped, and thus delaying us from getting out his trach completely. In April we have another broncoscopy scheduled to help us find out what type of surgical correction Luke needs in order to breathe without a trach. It’s very possible that Luke will have to have a complete airway reconstruction. If this is necessary, it is scheduled to take place in early May, just before Luke’s second birthday. If all goes smoothly, we hope to have his trach out by mid-July. We then have one more planned heart surgery, and Luke should be done with surgeries. We will continue to have physical therapy, feeding and speech therapy, and occupational therapy until Luke has completely caught up to age-appropriate development.

It has been a terribly long and difficult journey. We have miles to go before we can really say “It’s over.” Through all of this we have learned just how near God’s comfort is. We have learned a great deal about God’s sovereignty as well as the intense love he has for each of his children. We have learned about the power of prayer and the value of asking God to intervene when a situation seems utterly hopeless. This journey has so far been long and extremely painful, at times very lonely. But if even one person discovers faith in God because of hearing our story, we believe that it has been worth it.

We're Praying for a Great Year!

2011-01-20T17:36:00.000-06:00

Hello friends and family.

Not much is going on with us medically these days, but I wanted to update everyone on what’s going on with Luke, and where we hope to be headed in the coming months.

First, let me tell you about what life looks like these days at our house. Luke is mobile! This week I bought baby gates, cabinet locks, and table lamps to replace the floor lamps that Luke keeps pulling over. Luke is stellar at “army” crawling. Once in awhile, he’ll get up on hands and knees, but it doesn’t last very long. Luke pulls up on everything. He can even stand up just using a blank wall for balance. He is a pro at cruising the furniture. I frequently look up from what I’m doing and find Luke in the hallway! He loves to crawl over to the kitchen and hear the way things sound when he throws them on the kitchen floor. This is a really good problem to have. We are so joyful that he has come this far.

This week, we met with an orthotics specialist at our physical therapy office. She assessed Luke’s gait. When walking, Luke has been turning out his right foot, almost perpendicular to his left, so his physical therapist suggested we get it looked at. The orthotics specialist decided that Luke needs some assistance while he learns to walk. She fitted him for so orthotics called “Sure Steps” which are basically thin plastic boot that extend to just over his ankle that Luke will wear on both feet. They go under his shoes, and we are pleased that the orthotics are so low profile. We should be receiving those in 2-3 weeks, and then look out world, here Luke comes! Our goal is to have Luke walking by his second birthday.

While he has been vocalizing quite a bit, he hasn’t said any actual words. He seems quite smart to us though, as he knows several signs and can communicate a bit with us that way. His signing “vocabulary” includes “Mamma”, “Daddy”, “hi/bye”, “finished”, “no”, “I love you”, and his latest one: “play.” He can also show you how to wash his face, comb his hair, and where his mouth and ears are. He’s fantastic at taking off his socks and shoes (we can’t keep them on!) and his pants (this has yet to happen in public so far). The sweetest thing is that he learned to give kisses a few weeks ago. It is precious!

Luke has also made tremendous progress in his eating. We had been “tube” feeding him while we would feed him orally to emphasize the connection between eating and feeling full. Recently we figured out though, that half way through the feeding, Luke was getting so full that he didn’t want to eat any more. We now wait till he’s hungry to feed him orally, then tube feed him about 30 minutes after he’s finished his yogurt. While using the previous method, we were only able to get him to take about 3-8 bites in a sitting. We stayed at that plateau for a long time. Today in less than 30 minutes, Luke took 23 bites, which equaled about half of a 3.5oz container of yogurt. A new technique called a “chin support” (his speech therapist just uses her hand to support his chin) really ticks Luke off, but it helps him to swallow much more of the food (as opposed to thrusting most of the yogurt out with his tongue) and much faster. It’s gut wrenching for me to watch him scream and cry the whole time through speech therapy, but I have to remember that he’s not in pain, he’s just mad, and learning to eat is really good for him and absolutely necessary. My plans are to discuss with Luke’s nutritionist next week about getting Luke on a more normal eating schedule, and what it would take to replace a tube feeding with an oral feeding. Right now Luke gets tube feedings at 6:30 am, 11:00, 4:00 pm, 8:00, and 12:00 am. My informal survey tells me that most children Luke’s age do not still have 5 feedings a day, much less that those feedings take place at 8:00pm and 12:00am. I’m eager to get him moving towards normal eating habits.

Luke’s last broncoscopy was just after Thanksgiving. Two weeks later, I took Luke to his post-op follow-up appointment with Dr. McClay where we received a time-specific plan for Luke’s hopeful decanulation (remember, this means getting the trach out). The first step is a broncoscopy scheduled for April 4. At that time, Dr. McClay should be able to discern what type of correction is needed for Luke to be able to breathe without his trach. If the tissue is hardened, he should be able to widen the airway by simply cutting out tissue. Since the tissue is expected to be mature enough at that time, it shouldn’t grow back. If the tissue is soft, we have a bigger problem. That will either mean that the tissue is still not mature enough to make the correction, or, if it is mature, that Luke must undergo another major surgery. This surgery is basically an airway reconstruction in which Dr. McClay will take some cartilage from Luke’s chest and use it to hold open the airway. This is an expected four-hour procedure called a Laryngotracheal Resection or LTR. It is also going to be a little more complicated for Luke considering his cardiac issues.

We already have the LTR scheduled, so that we won’t have to wait for scheduling if it turns out that Luke needs it. The surgery is scheduled for Monday, May 9. Recovery is expected to take 5-7 days—1-2 days on the ICU, and 4-5 days on the inpatient floor. If you want to do the math on that, Luke could very possibly be in the ICU for his 2nd birthday. We should be able to cap Luke’s trach soon after the LTR. 4 weeks after the LTR, Dr. McClay will do another bronc and remove the stint that he put in during the LTR. Two weeks after that, we will go back for another bronc in which Dr. McClay will check for scarring. Next comes a sleep study, which should just be one overnight stay in the hospital. Then, four weeks after the previous broncoscopy, we will go in for one more broncoscopy to make sure everything is looking good. If everything has gone well up to this point, we should be able to pull Luke’s trach. The whole process should take about 15 weeks from April, and put the actual decanulation around July 18. We’ve built in quite a bit of “wiggle room” to work with so we don’t run into the fall again and have to wait till the following spring. It feels good to have everything on a basic timeline. It gives us a piece of mind, still knowing that Luke is going to work on his own timeline.

When I think about the April bronc, I get high anxiety. I’m desperately praying that we don’t have to go the LTR route. My prayer is that we can get his trach out much sooner than that. It feels like we’ve been waiting forever. 6 months seems so long! Even when I hope for the tissue to be hard, doubt begins to creep in. I remember the frustration, anger, and tears of trying to cap Luke this past summer/fall, and I fear that we may have to go there again. My heart quails at the thought of restarting that process. Even if we don’t have to do the LTR, my guess is we have a couple more broncs and a sleep study awaiting us before decanulation. But I know God is with us, whatever happens. He has not left us yet.

We thank you all for your faithful prayers. Luke has truly exceeded our expectations for his growth and development so far. It would mean so much to us if you continued to faithfully pray for another great work of God in April. Pray with us that the LTR will not be necessary, that the road to decanulation is extremely smooth and straightforward and faster than we can hope. Wouldn’t it be wonderful if Luke got a decanulation for his birthday (and mom for Mother’s Day!)?! Pray for us that whatever happens, we will continue to trust in God for his timing. We are so overwhelmed by all your care, love, and support. We know that many of you continue to pray for us daily, even when nothing is really going on. Many of you are aware that every day in Luke’s life is precious and important for his development. We are so blessed to have you praying along with us each day.

Blessings,

Rachael, David, and Luke

Thanksgiving 2010

2010-12-07T19:15:00.000-06:00

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Luke's Fourth Broncoscopy

2010-11-30T15:12:00.000-06:00

Yes, it is Luke’s fourth, even though I titled the last note “Luke’s Second Broncoscopy”. Last night I was thinking over all the procedures Luke has had to be anesthetized for, and remembered that Luke had one broncoscopy before he was trached at 3 months old. Anyway, this is the story of Luke’s fourth bronc.

After Luke’s third bronc in September, our ENT surgeon, Dr. Chung, told us that he had removed more tissue that had grown up in Luke’s airway above Luke’s trach. Dr. Chung was confident that Luke should be able to begin using his cap and moving towards decanulation within a few weeks. As you already know, the longest Luke has tolerated his cap has been for 13 breaths (a little longer than 30 seconds). That puts us still a ways from decanulation because Luke has to tolerate the cap around the clock before they will consider pulling his trach. At our most recent visit with our pulmonologist, Dr. Gelfand suggested that we get a second opinion from another ENT surgeon specializing in pediatric airway issues. His office set us up an appointment with Dr. McClay for the end of October.

As expected, Dr. McClay wanted to send a scope down Luke’s airway so that he could see with his own eyes what might be causing Luke’s difficulties. The broncoscopy (4th total, 3rd within seven months) was scheduled for yesterday morning at Children’s Hospital.

I went in with quite a bit of anxiety and dread. So far, we have done nearly everything concerning Luke’s care through our doctors at Medical City (there was that five-week stint at Our Children’s House at Baylor, but we don’t like to talk about that). Everything from blood work to MRI’s to ER visits to Luke’s major surgeries has been performed at Medical City. As you can imagine, David and I are quite attached to the folks that work there and accustomed to the way that hospital works. I can get pretty high anxiety in new situations like this. I was dreading not knowing the people caring for Luke, not knowing my way around the place, not knowing the rules of the hospital, etc. Plus, I didn’t have high hopes for finding out any new information about Luke’s difficulty, since Dr. McClay declined to confer with Dr. Chung.

We arrived at Children’s Medical Center at 7:15 yesterday morning. I admit I was very impressed with the ease of finding our way around, with the parking, and with the helpfulness of the staff. If you walk into a room looking slightly like you don’t know where you’re headed, someone asks you if they can help you get where you’re going. Checking in and getting Luke ready for the OR was fairly easy and straight forward. The staff was really good at answering questions and telling us how things would go. We waited quite awhile from the time we were finished with pre-op before the nurse came to take Luke to the OR. Even though this was the sevententh time they’ve taken Luke like that, I still cried.

The procedure took about an hour and 10 minutes until the doctor came and spoke with us about his findings. He cleared out another chunk of granulation tissue in Luke’s airway above his trach, although, I don’t know how large it was compared to the others that have been removed at other times. Dr. McClay showed us pictures of Luke’s airway and told us that it is significantly narrow. Before he dilated the airway, the pictures looked like his airway is just a slit, where it should look like a pipe. He dilated the airway to find out the nature of the tissue. From my understanding, it was difficult to do and nearly impossible to keep it dilated. This told him that the tissue is quite soft and immature. Because of the immaturity of the tissue, he can’t do anything to repair it at this time. It’s impossible to know how the tissue is going to change in the near future. He expects that Luke’s airway tissue should mature enough to know how to correct it by the time he’s two years old.

So our plan is to take Luke back to Children’s for another bronc in April (Luke will be almost two). At that time Dr. McClay expects that he should be able to correct the narrowing (called stenosis) one of two ways. If the tissue is hardened, he expects that he can laser the tissue out, with minimal chance that the tissue will grow back. If the tissue remains soft, cartilage can be taken from another place in Luke’s body and grafted into his airway, for an airway reconstruction. This will firm up Luke’s airway and help it to stay open to allow for breathing. Either procedure should allow Luke to breathe without his trach, although I don’t know how soon after surgery we should be able to decanulate. I don’t know if it would be immediate or a gradual thing to give us time to make sure tissue doesn’t grow back, etc. Until then, we’re just going to do what we’ve been doing as far as Luke’s care is concerned. We’re going to continue getting nursing care, making sure that Luke can use his PMV all the time (not taking it off whenever he gets stressed), and allowing him to grow and catch up developmentally as fast as he can.

I was pretty impressed with how the hospital handled Luke’s recovery. Usually, kids go into the Post Anesthesia Care Unit (PACU) after surgery. Since Dr. McClay knew that Luke is primarily a heart baby and has had a tough history, he arranged for Luke to bypass the PACU and go directly to the Cardiac Intensive Care Unit (CICU) to recover. This unit is, for all intents and purposes, just like home-sweet-home CHSU (Congenital Heart Surgery Unit) at MedCity. The staff was very attentive to Luke, helpful to us, and allowed us to take as big a part in Luke’s care as we wanted (we even ended up writing part of Luke’s discharge summary since they rarely send a patient home from that unit). I had been worried that since the staff didn’t know us, that they wouldn’t allow us to suction Luke, etc., and we would have to wait for the staff to do everything. This wasn’t the case at all. I was comforted by their friendliness.

Luke did well coming out of anesthesia. He was expectedly fussy when he woke up, but holding and rocking, mom’s signing, and VeggieTales helped quite a bit. He was sitting up quicker than after all of his other broncs. We had a bit of trouble weaning him of oxygen. Luke’s secretions were really thick and bloody (sorry if that grosses you out), and he had very little reserve when suctioning. Every time we’d suction, he’d desat. Once he went as low as 34%.

The staff was a little nervous to allow Luke to go home after a desat like that, but our nurse advocated for us after he saw David’s and my skill in taking care of Luke (using oxygen, suction machine, pulse oximeter, etc.). Luke got stronger and stronger and stopped desatting so far when we’d suction. By the time we left he was only desatting to the low 70s% after a suction even after we’d weaned him completely off of oxygen. By 5:30, the discharge papers were written, and we were rolling Luke down the hall to freedom.

We got home and got Luke settled. Mercifully, our night nurse offered to come in early so we could all rest after a really long day.

So now, we wait. We plan on enjoying our holiday season while we continue to care for Luke as we always have. We are holding out the hope that with the arrival of spring and Luke’s second birthday that we’ll get to celebrate with a big ol’ decanulation party. We are thankful that the procedure yesterday yielded some answers and a vague plan. We continue to ask for your prayers for patience, wisdom, and endurance, and as always, Luke’s continued safety and improved health. Thank you for your prayers yesterday and every day.

Blessings,

Rachael, David, and Luke

Monday

2010-11-29T19:22:00.001-06:00

Luke has been out of the OR since about noon. He did great all through the procedure and coming out of anesthesia. He's awake and fussy off and on. We should be able to take him home later this evening if we can wean him off oxygen. I'll update everyone on the results of the broncoscopy in a note tomorrow.

Small Emergency

2010-11-17T22:02:00.000-06:00

So... Luke didn't exactly pull his trach out...

For months, especially when his speaking valve (PMV) is on, we have been trying to keep Luke from pulling on his trach. Sometimes he pulls at it frantically to try and get the PMV off. Lately, he's just been pulling on it, and when the filter (called an HME - Heat/Moisture Exachanger) comes off, he likes to put it in his mouth and hold it between his teeth. Makes him look like he's smoking a cigar. It's difficult to relay to him the seriousness of the matter when you're cracking up at the way he looks with that thing in his mouth.

This evening, I was drying my hair, with Luke sitting in his bouncy seat (yes, sometimes I can still keep him contained in it for short periods) since he was still sleepy from his nap. David was still at work, we were alone in the house. When I turned off the hair dryer, I heard a strange whistling noise coming from Luke. It wasn't the same whistling that he makes when his trach is out (during trach changes), nor was it the whistling he makes when his HME comes off or he needs suctioning. I looked over and my heart leaped out of my chest. I couldn't see his trach protruding from under his chin like I normally can. I knelt down to look more closely. He hadn't pulled his trach out, but he had pulled it apart. He separated the trach in two from pulling on it so hard. (See picture below).

Normally we have trach ties on his back-up trach so it's ready to go in case of an emergency. I dropped the ball on that this week. The trach was where it was supposed to be, but without ties on it. I rushed and set Luke on the floor of his room, tried to put one tie on the trach and just gave up. Luke was starting to panic and turn a little gray. Anyone want to guess who else was on the verge of panic??

I kept my cool. All I could think was "He's got 2 minutes without oxygen, and he's still breathing. I've got time to do this." I didn't take the time to swaddle him or put the other tie on (turns out I put the first one on backwards anyways). Changed the trach without really even thinking about it, and got the ties on and fastened around Luke's neck. We're both fine, although a little rattled. Luke was pretty mad that we had to do trach care twice tonight, but I think he's over it.

I just wanted to share that I'm proud of myself for doing our first emergency trach change, by myself none the less. Thanks for your prayers (and your cheers!).

Anyway. Just thought I'd share.

Rachael

Above you can see a picture of Luke's broken trach. The pieces are completely separated. The right "tube" portion of the trach is the part that goes inside Luke's trachea. The perpendicular part is the part that lays against Luke's neck (or lack thereof). On the left side is the extension part of the trach that holds the opening away from his neck so we can access the opening. The opening portion is the part he separated (on the far left). You can even see the coiled wire popping out (I'm glad it didn't cut him!)!

Halloween 2010

2010-11-06T16:44:00.000-05:00

*thanks Aunt Rachel and Uncle Blake for sharing your pictures!

Wednesday

2010-10-27T17:45:00.001-05:00

Just got home from our first appointment with second opinion ENT. Did a brief in-office scope of Luke's upper airway that revealed nothing we don't already know (vocal chords are not paralyzed and his airway is narrow). Scheduled another broncoscopy for 11/27. That is A MONTH AWAY. That's a long time for us to know nothing and sit on our hands. Frustrated and tired after a full day navigating the medical system.

Luke: The Early Years

2010-10-14T16:06:00.000-05:00

*photos courtesy of Aunt Rebekah

Tuesday

2010-10-12T16:15:00.000-05:00

Just got back from Luke's pulmonologist. He believes very strongly that Luke has an "upper airway issue". He advised us to get a second opinion from another ENT. We'll see Dr. McClay Oct. 27 and see if he has any great wisdom for us. I'm having a tough time dealing with the fact that there's something "new/additional" that we're dealing with. We appreciate your continued prayers.

Monday

2010-10-11T22:42:00.002-05:00

Going to see Luke's pulmonologist tomorrow. Don't have the kid capped as we hoped. Pray for us.

Tuesday

2010-10-05T18:02:00.002-05:00

Luke pulled up to STANDING for the first time today. He's pretty proud of himself. We're pretty proud of him. It's only been a year since we got him home for the first time. I'm so excited to have gotten to this milestone. Singing praises to my Lord.

Luke's Second Broncoscopy

2010-10-04T22:55:00.002-05:00

Hey everyone. I wanted to update you all on the latest from the Chisholm household and Luke’s journey to medical freedom.

A week ago on Monday, I took Luke to Medical City for two appointments, ENT and cardiology. I was quite nervous to take Luke by myself. I’ve driven Luke to physical therapy appointments on my own each week for a few months by myself, but that road is a back highway with lots of places to pull over if Luke needs suctioning or something else. This time, I would have to travel on two interstates and another major highway to get there. Plus, we were looking at 45 minute trip versus the 20-25 minute drive to therapy. By the way, David couldn’t go because he had to officiate at the funeral of a much respected member of our congregation. Well, we did fine. I took a different route to the hospital to avoid a long section of construction (and NO pull over spots), which added to my time, but gave me piece of mind. I had to pull over once each way, but we didn’t have any difficulties with that. I was really worried about the trip, so I want to thank all of you who prayed for us that day. Things went very smoothly.

First up was the ENT (Ear, Nose, and Throat Surgeon that placed Luke’s trach). Dr. Chung was quite perplexed that Luke has been able to breathe through the PMV (Passy-Muir valve, or speaking valve) with all that gauze and tape on there, but cannot make the jump to tolerate the cap. We disguised the cap, just to make sure the rejection of the cap is physiological and not psychological for Luke. Indeed, it’s not that he won’t accept it, it’s that he physically can’t right now. Dr. Chung told me that the only thing he could think of that would cause Luke to respond this way is that Luke has grown up more scar/granulation tissue in his airway, making it more difficult for him to breathe. He suggested doing another broncoscopy in which he would drop a scope down Luke’s throat to see what’s going on and remove any excess tissue that has built up if necessary. He told me that his priority is to get Luke decanulated. That was music to my ears, so we scheduled the bronc for the first available time, which happened to be on Thursday morning, three days away. Dr. Chung told us to come to the hospital prepared for an overnight stay, because he might choose to keep Luke overnight for observation.

In between appointments, I took Luke to tour the new Children’s Tower (which is dazzling!) and to visit old nurse friends. We even got to visit Dr. Mendeloff (Luke’s heart surgeon) and Dr. Harris, Luke’s favorite anesthesiologist.

At the next appointment, Dr. Kao was very well pleased with Luke’s progress. Luke even kept trying to give her hugs when she was listening to his heart. The EKG was unremarkable, and we’ll wait until the next time (late December) to look at his heart via sonogram. It was quite a short visit, and nothing outstanding happened – the kind of visit you’re glad for in Luke’s case. So we went home to prepare for surgery day.

Thursday morning we left the house by 5:45 am. By the time we got to the day surgery room, Luke was awake and flirting with all the nurses. Just after 8:00, they gave Luke some “goofy juice” to help with separation anxiety, and took us to the pre-op holding room. We met briefly with the anesthesiologist (alas, not Dr. Harris) and Dr. Chung. I asked Dr. Chung outright if it mattered to him what season/time of year it is for Luke’s decanulation. Dr. Chung said he didn’t care. He wants to get Luke’s trach out whenever he’s ready, regardless of time of year. More music to my ears!

Luke gave us some good laughs from being “drunk” on his “goofy juice”, and by 9:00 we had left him in very capable hands and settled down in the OR waiting room. Soon after, one of our close nurse friends, Ellie came to wait with us. It was her day off, so she brought her cute little boy who entertained us for the rest of the time we waited.

Surgery took about two hours, and then Dr. Chung came out to tell us what happened. He had removed another ball of tissue above Luke’s trach, although not as big a piece as he did back in May. He also explained that Luke’s vocal folds are thicker than normal, so he “thinned out” one of them. He didn’t do both so that scar tissue from both sides wouldn’t grow together and put us back where we started. He also prescribed a steroid to discourage scar tissue from re-growing, but warned us that we very well might have to repeat the surgery in a few months. He strongly encouraged us to really push getting Luke to use the cap, because the more airflow that portion of his airway gets, the less likely it is that the scar tissue will re-grow. So, conclusively, Luke’s rejection of the PMV at times and the cap all the time is not due to stubbornness or us as parents not being firm enough. I don’t know if I’m more relieved to know that this all has a very physical cause, or ashamed that I pushed him so hard to use the cap and he physically could not do it. Poor kid was doing the very best he could with an airway the size of a coffee stir straw.

Dr. Chung took us back to see Luke. His o2 sats were stellar and he was sleeping. Dr. Chung put his thumb over Luke’s trach to occlude it, to see if Luke could breathe. Luke took several breaths, though he fussed a lot. Dr. Chung told us that it’s obvious Luke isn’t comfortable with it now because he’s not used to it yet. David and I sat at Luke’s bedside while he slept. The nurse weaned him off oxygen, and he maintained very acceptable o2 sats. Not long after that, we got to move to a post-op room. Luke continued to sleep into the afternoon. We started a Pedialyte feed, and Luke kept the fluid down. The nurse told us we could leave whenever we were ready. We walked out of the hospital at 2:30 the same day! No funny business!

After Luke’s broncoscopy in May, he wasn’t able to tolerate wearing his PMV until post-op day five. I told myself at the beginning that I wasn’t going to get discouraged this time until day five. That’s tomorrow. Just when doubt and worry started to creep in today, I tried the PMV (no gauze or tape) while letting him watch a movie in his Exersaucer (double distraction!). After just a little encouragement, he quit pulling at it and started chattering happily! Oh, how I missed that sweet baby voice! I tried the PMV several times this morning before his nap, once during, and another time afterward, but no dice. I guess he just needed a distraction for long enough to remember he can do it. Our plan is again build up the PMV with gauze and tape, and then try to push the cap in the next few days.

We’re asking you to pray once again for Luke and for his parents. Pray for Luke that his throat heals with minimal scar tissue re-growth. While we would of course do it if we have to, we would love to avoid any more surgeries like Thursday’s. Pray that we can work back up to the PMV with gauze and tape, and finally the cap. It would be ideal if we could have Luke capped comfortably by the time we visit his pulmonologist on Oct. 12 or when we visit Dr. Chung for his two-week follow up on Oct. 15. That is not very many days away. Pray that we can get him decanulated very soon, and that his pulmonologist will be on board and not force us to wait until the spring. As always, we appreciate prayers for David and me, that we can have wisdom, strength, endurance, and serenity to get through whatever is ahead.

We treasure all of your encouragement and prayers. We survive on them. God’s grace is indeed sufficient. Thank you all.

Blessings,

Rachael, David, and Luke

Catching Up...

2010-10-04T19:25:00.000-05:00

September 30

Just got home with a somewhat fussy but quite healthy (for him) baby. Doc pulled out another clump of tissue out of Luke's throat - although it wasn't completely obstructing the airway this time. Luke's o2 sats are a tad bit lower than normal, but he should be back to normal by the morning. Praising God for a successful surgery, quick recovery, and that we don't have to spend the night at the hospital tonight!

October 4

Luke is wearing his PMV a full 28 hours earlier than he was able to after his last throat surgery! Babbling away. Oh, how I missed that baby voice!

Monday

2010-09-27T21:03:00.002-05:00

Just got back from the doctor's appointments. ENT wants to do another broncoscopy to check Luke's airway to see why he won't tolerate capping his trach. We're scheduled for early Thursday morning. Everything else (cardiac) is great. I'll write a note soon. The trip up to Dallas (alone) went very smoothly. Thanks for your prayers.

Capping Progress Report

2010-09-01T19:59:00.001-05:00

Hello friends and family. I wanted to give you an update on the progress Luke has made towards capping his trach.

Last time I wrote, it was with relief that there was no hard and fast deadline towards getting decanulated before the fall. David and worked hard at building up the gauze and tape on Luke’s PMV to make the transition smoother between PMV to cap. Even though there is no hard deadline. My (over-achiever?) brain still imposed a soft “if we can’t get it by mid-August, it’s not going to happen” deadline. So we pushed. I prayed fiercely every day multiple times that God would allow us to get Luke decanulated by the fall. I hung all my hopes and dreams on decanulation by fall.

As many of you more experienced parents know, kids go at their own pace. Sometimes pushing them too hard tends to get them to go the opposite direction. I pushed too hard. My days started revolving around how many pieces of tape and gauze I could put on his PMV. Resentment started building up (at no one/nothing) in particular whenever he’d have to take steps backwards or start with less resistance in the mornings. I remember one Wednesday night at church after giving Luke a breathing treatment, I could not get him to wear the PMV again. He held his breath and turned blue. When he did take in some air, he let it out crying at the top of his lungs. He struggled against me because I was holding his hands to keep him from ripping the thing off. I was mad at Luke for the first time ever: “Wasn’t he just being stubborn? Didn’t I have to win this battle in order to be a “good parent” and to teach him that he can’t manipulate me? I’m the parent! I’m in control!” But I wasn’t in control. There had to be a better way. So I took the PMV off. As Luke calmed down, I became more and more distraught. I held him and cried like a big ol’ baby in the church’s cry room.

It was a few days after that when I started to become resigned to the fact that we weren’t going to make this self-imposed mid-August deadline. It was a grudging resignation, and I was honest with God about that. In my search through blogs and chat rooms trying to find some help or ideas with an easier way to cap Luke’s trach, the Lord gently reminded me that this isn’t the end of the world. He showed me posts of other moms of kids who have been trached for years and years – and will probably never be decanulated. If they can do that, I really need to not be whining about another 9 months. A quote from a friend about God sometimes not being very interested in the end result of our prayers, but very interested in what we learn through the process, got me started thinking about what I need to be learning from this process instead of demanding that God heal Luke to my satisfaction and on my timeline. Another quote from a different friend reminded me that we lose a lot of fulfillment when we rush things. I admitted to God that I was rushing. I’ve never rushed something so intensely in all my life. So all of these things together helped me adjust my attitude. I was still very disappointed, but no longer resentful and much more peaceful about the situation.

With David in agreement, we dropped all the way back to the plain PMV with no gauze or tape. We started letting Luke drive this wagon (for good or for ill, as far as parenting goes). If he didn’t want to wear the PMV, we gave him a break. If he didn’t want to fall asleep with it on, we took it off until he fell asleep.

Then a pretty cool thing happened. I started noticing things about Luke that I had been too focused on the capping process to really appreciate. He was swallowing faster and easier during speech therapy. He started rolling on his own, and even spending time voluntarily on his tummy! He’s sitting up on his own for long minutes and enjoying it. He’s been encouraged to explore his voice by our friend Jay Trischitti (and of course us!). He’s now very proficient at saying “ya ya ya!” and getting better at “da da da” and “la la la”. He’s going to be crawling any day now, and he’s standing when you support him and encourage him to. He’s started to express his love for Mama, Daddy, and others with the sweet, sweet gesture of laying his head on your shoulder and then looking up and grinning at you. I was seeing these things, but was not fully appreciating them (or thanking God for them) as the miracles they really are.

So where are we now? Luke is just wearing the PMV (no gauze or tape) right now. Most of the time during the day, he’s been doing it without protest, though we still have our moments. Today and yesterday he fell asleep for his first nap with it on (he had regressed to not being able to fall asleep with it on). I’m starting to learn the difference between him telling me “Mom, I don’t really feel like doing this right now” – which I help him push through (usually), and “Mom I really AM NOT going to do this now!” – which I let him win those battles. As a family therapist, I worry that Luke is going to catch on and start making everything an “AM NOT” battle, but I guess we’ll cross that bridge if we get there.

Today I called Luke’s pulmonologist about making an appointment for the next visit, since were planning on waiting to see him for the capping trial. I explained to the nurse the road we’ve been down. She was very encouraging and told me we have been doing a good job pushing and backing off as necessary. She said that some kids just don’t like change very much, but as long as he’s still tolerating his PMV, there’s nothing physically/medically concerning about his resistance to the capping. We made the pulmonologist’s appointment for Oct 12. She told me that if Luke started tolerating his cap before then, that we can still call and schedule a capping trial. So even though it’s Sept 1, we might not have to give up yet. We will also visit the ENT surgeon on Sept 27. He also has the authority to decanulate Luke, so we may have another shot with him as well.

I want to thank you all for your prayers up to now for Luke’s progress towards decanulation. Please don’t stop praying. It would be just stupendous if he could be trach-free for the holidays (and beyond!). But please also pray for David and I, especially me, that we don’t push too hard again. It is very tempting to make another hard “rush” at the Sept 27 and Oct 12 dates. We need peace whatever happens. If God says “not now”, we need courage and stamina to do this trach thing another 7-9 months.

I am so thankful to you all. I wish I could invite all of you into our home to see how Luke is grown and how he’s progressed. He is such an amazing, loving, expressive little boy. Thanks be to God who is the maker and protector of Luke’s amazing little life. Thanks for your prayers and your wonderful encouragement.

Blessings,

Rachael, David, and Luke

Up, up and away!

2010-09-01T09:23:00.003-05:00

Luke Does OKC

2010-08-26T19:25:00.000-05:00

*photos courtesy of Aunt Rebekah

Saturday

2010-08-08T08:04:00.000-05:00

Listening to my baby boy experiment with his voice as he plays on the floor. Oh, sweet Saturday!

Monday

2010-08-02T11:50:00.001-05:00

He's not even tollerating the PMV with no gauze or tape today. Losing hope for decanulation by fall, folks.

Saturday

2010-07-31T15:50:00.000-05:00

Just installed Luke's convertable car seat. He was really too big for the carrier a while ago, but I wanted to make sure he could sit in a restaurant high chair and sit in a shopping cart before I switched over. End of an era. My question is, is Luke gonna hate me since I took away the singing frog that attached to the bar on the carrier?

Friday

2010-07-31T06:48:00.001-05:00

It's 10:00am. Luke tolerated his PMV before he woke up this morning. He's completely taped off, although this tape is more porous than what we were using, so it's taking more layers for equal resistance. I just added another layer, and he didn't even blink. He's rolling on the floor talking. Looks like another good day in store at the Chisholm household. Capped by the end of the weekend?

Slow Progress

2010-07-22T18:04:00.001-05:00

Hello Friends and Family

It’s been a little over a week since my last post, and our visit to Vent Clinic and Luke’s pulmonologist. I wanted to give a brief (as possible) update on how that went and where we’re headed now.
First of all, so many prayers were answered when we got to see Dr. Gelfand’s partner, Dr. Copenhaver. We have nothing against Dr. Gelfand, but have felt in the past that Dr. Copenhaver has a more optimistic and progressive style of practicing medicine. I was thrilled when I heard he was in vent clinic that day!
Luke had to get stuck several times to get enough blood for testing, but all his numbers came back just fine. His sodium was on the low end of normal 131 where the range is 130-140. I was okay with this number, because I had been a little worried that maybe the upped amount of sodium we give him each day was too much. Not the case. Everything else went smoothly, and we got to see Dr. Copenhaver.
He was pretty impressed with Luke’s progress on the modified PMV/cap. He kindly described the path that we’re on and the timing of Luke’s decanulation. He let us know that the August 1st deadline is not hard and fast. Summer lasts a long time in Texas, so as long as cold weather doesn’t come on freakishly fast, and we don’t have an early outbreak of RSV or flu season, or a wacky outbreak of something like Swine Flu, we should have all of August and into September to reach our goal. Nothing like adding on 4-6 weeks to our deadline to relieve some of the pressure. We need to go at Luke’s pace to work towards capping him completely. Once he is capped for a week straight, then we can call Our Children’s House and get Luke set up for a sleep study. I don’t know how long he’ll have to stay this time, but on the sleep study night, they will do half the night with him breathing through his trach, and half the night capped. In the morning, they will look over the results. If his sleep with the cap is comparable to his sleep without the cap, then they will move to the decision of decanulation. Everybody important will weigh in, and if everybody agrees, Luke can be decanulated right then and there.
So a week after vent clinic, where are we now? Unfortunately, we’ve been moving slower than either David or I would like, I think. It seems like Luke takes two steps forward, and then one step (or two or three steps) back. Luke has had some trouble with what seems to be allergies, which obviously makes it harder to breathe. Today he spent the entire morning just wearing the PMV with no gauze or tape. This afternoon, we’re slowly adding gauze and tape, and increasing the difficulty. We’ve had a few days where Luke has spent most of the day with the PMV completely taped. He still won’t tolerate the actual cap for very long, but the fact that he is tolerating it for even a few breaths is progress.
Meanwhile, we’re working Luke’s lungs out. He’s working pretty hard to breathe at times, but it’s like one of us increasing our cardio workouts. He’s getting stronger and stronger.
David and I sure hope to have Luke fully capped within the next few weeks. We obviously hope to be making the call to Our Children’s House by mid-August, but again, we’re forced to go at Luke’s pace. It’s so frustrating. I wish I could just explain to Luke and have him understand that if he works really hard at breathing and using his cap, we can stop trach care and suctioning forever. But he’s a baby, and so I’m forced to just plod along, taking two steps forward and one (or two or three) steps back.
Meanwhile, I think the allergies causing difficulty breathing, is making Luke scared of eating. He has thrown fits the last three times I’ve tried to feed him (speech therapist present or not) and has only swallowed successfully a handful of times. This is also frustrating.
Please continue to pray for us. Specifically, that we can make this deadline of having him capped and decanulated by the end of the summer. Pray that Luke’s breathing is eased, and that his anxiety is calmed when we use the PMV/cap. Pray for David and I that we can have stamina to finish this race, serenity to go at Luke’s pace and not to push him beyond what he can reasonably manage, and wisdom to push Luke when he needs it and back off when he needs a break.
Thanks for your continued prayers and words of encouragement.

Love,
Rachael, David, and Luke

Luke's Toddlerhood

2010-07-13T07:47:00.001-05:00

Luke's Race to Decanulation

2010-07-13T07:24:00.001-05:00

Hello friends. We’re facing a pretty big day on Tuesday, so I wanted to “rally the troops” again for your prayers in addition to updating you on Luke’s solid progress in the last several weeks. In Luke’s 1st year letter (that I just posted), I mentioned that Luke just had a surgery to remove a bunch of granulation tissue that was completely obstructing his airway. After the surgery, our ENT surgeon, Dr. Chung told us that Luke’s tracheo/bronchomalasia (the reason he had the trach placed to begin with) had completely resolved, and there was no reason why Luke shouldn’t be able to begin using his speaking valve (PMV), then his cap, then get decannulated (pull the trach out) all together in a matter of weeks to a few months. We were naturally very excited at this news…and naturally very disappointed when we tried the speaking valve when we got home that night, and Luke completely failed the trial. After a few days of trying and failing, David called the surgeon and told him that Luke hadn’t made any progress on the speaking valve. Dr. Chung thought that the issue might be swelling of his throat from surgery, but also told us that Luke’s airway is smaller than most babies his age (yes, it’s a developing theme). He thought it was possible that if no progress was made within a week, we would talk about airway reconstruction surgery to enlarge Luke’s airway.
We kept trying, and one day we put the PMV on and Luke began breathing through it and out through his nose like he’d been doing it his entire life. He looked at us like “what mom and dad? Why are you staring at me like that?” For the next 30 minutes or so while we drove to Mesquite to meet friends for dinner, I listened to him make baby noises for the first time since the very few cries at his birth. I was the one crying this time. Over the course of the next week or so, we battled with Luke and got him to use the PMV all the time during the day (he still had to be on the vent at night). I say battled because Luke inherited his mother’s stubbornness. Sometimes he would be okay with it, and sometimes he wouldn’t. It took several rounds one day of putting on the PMV, Luke crying, then stopping breathing, desatting, taking off the PMV, letting Luke recover, and trying again. We discovered that distracting him helped quite a bit most of the time, but whenever he would get stressed he would immediately pull at his trach. He’s gotten very adept at pulling off his PMV.
During the process of learning to use the PMV, Luke, David, and I went on Luke’s first trip out of Dallas. We drove the grueling 11½ hours to Albuquerque and back for my sister’s wedding. Luke did outstanding. Our only hang-up was that Albuquerque is about 5,000 feet higher above sea level than Dallas. Luke had to use a bit of oxygen, but had really gotten quite adjusted by the time we went home four days later. We had a fabulous time introducing Luke to all our family and friends that have been praying in New Mexico.
When we got home, we really got Luke using his PMV all the time during the day. After several phone calls and some run-around, we finally got Luke scheduled for a three night stay and sleep study at Our Children’s House at Baylor. Although David and I were dreading it, this was a necessary step to get Luke off the vent completely, even at night. We admitted Luke to OCH on a Monday morning at the end of June. Sunday night was his last night on the vent. On Tuesday night, David stayed with Luke at the hospital, and they went downstairs for Luke’s sleep study. I wasn’t there, and I’m glad I wasn’t. David told me that they had to tape diapers on my poor baby’s hands to keep him from pulling at all the probes and leads they used to measure his sleep. Luke passed his sleep study with no major problems, but we still had to stay a third night (thanks to my mom and dad who stayed with him the third night). While Luke was at OCH, his nutritionist wanted to switch him over from an infant formula to a toddler formula. We wanted to do it while he was in the hospital because of the sodium issues he had back in March. We wanted to ensure his sodium stayed stable. By Tuesday, Luke’s sodium level had been very slowly, but steadily creeping downward. They wanted to keep him one more night so that they could monitor that. By Thursday morning, we took a vent-free baby home in our new SUV (we were able to purchase a bigger vehicle for toting Luke and all his attachments around, thanks to our friends Mark and Janna Hanner). It was a good day. About a week and 6 pokes later, we got Luke’s sodium level back registering within normal limits. OCH was an all around successful stay, and it wasn’t even quite as painful as we were worried it would be.
Once we got Luke home off the vent, we started really working toward capping Luke’s trach. We at first started just trying to use the cap, cold turkey. Luke freaked out every time we tried to cap him. He would take a breath or two, but he would panic, his heart would start to race, and his o2 sats would plummet in a matter of seconds. We struggled this way for several days, and Luke didn’t seem to be making any progress. I prayed that God would give me wisdom on how to make the transition from PMV to cap smoother and easier for all of us. He gave me the idea of taping off Luke’s PMV a little at a time, to make it increasingly difficult to breathe in through the PMV. After a few days of this, the jump from taped PMV to cap was still too big. I got the idea to begin taping gauze over Luke’s PMV and increasing the gauze at intervals. This has gotten us much closer to simulating a cap without actually capping the trach. As I’m writing this today, I’ve got 24 layers of gauze taped over Luke’s PMV, and we’re slowly taping over portions of the gauzed PMV. Right now, he’s got about 1 square millimeter of gauze that isn’t taped over. For some reason, going from that 1 square millimeter of space to completely taping over it is very difficult for Luke, even though I can’t tell much of a difference when I try and breathe through it. Bottom line is that with my modified version of the PMV/cap hybrid, Luke is doing all the breathing in and out of his nose and not using his trach at all. My understanding of why Luke still won’t tolerate the cap and has a tough time tolerating the completely taped and gauzed PMV is due to the pressure that builds up in his lungs when the trach is closed off (like the pressure you feel in your ears when you roll up the windows in your car as you’re traveling on the freeway).
My ultimate hope was to have Luke using his cap like a pro when we walked in to vent clinic and his pulmonologist’s visit on Tuesday. I have the feeling that Dr. Gelfand is quite skeptical that Luke is ready to be capped and then decannulated. I wanted to “show him” that Luke really is ready. Saturday, I set out to work with Luke all day until we accomplished the goal of truly capping his trach. This goal was not met. I went to bed Saturday night and cried, because I was so certain that Luke would be able to do it, and we both ended up being extremely frustrated. Sunday, I pushed hard again, with the same result. Luke continually was pulling off his PMV and throwing it, and it was getting more and more difficult to distract him. David and I talked last night and we decided that I would quit pushing so hard. I’ve come to accept that we won’t walk into Vent Clinic with Luke’s trach capped.
So now, my request for prayers. Our nurses, who have known Dr. Gelfand very well since he was an intern ages ago, have told us that his typical MO is that if he doesn’t have a kid capped by August 1, he won’t decannulate until the following spring. He doesn’t want to take the chance of the child getting sick during cold/flu/RSV season and needing that airway. Could we live with that? Yeah, we could live with it, but I really don’t want to. I really don’t want to do nine more months of suctioning constantly, trach care, trach changes, and hauling 3 huge diaper bags wherever we go, especially not when Luke is so close to capping. If Luke could talk, he would tell you that he’s ready for trach care, suctioning, and trach changes to be over tonight!
I would ask that you all pray for a successful vent clinic tomorrow. Pray that Dr. Gelfand recognizes Luke’s progress and earnestly works with us on decannulating Luke before the fall. Pray that Luke’s airway and lungs are strong enough to do this, that God calms him when we do capping trials, and that we have the wisdom and courage to push him when we need to and back off when he needs a break. Decannulation will be a dream come true for us. It will give us so much more freedom and mobility as a family. We hope that you join us in praying that we can achieve that sooner rather than later. But as always, in whatever way God can best be served by our struggle, we pray that God’s will is done and not ours.
Before I go, I want to tell you about the strides Luke has been making since his last illness and hospitalization in March. Since then, Luke’s sternal precautions (no tummy time, can’t lift him by his arms, etc. due to his sternum being cracked for heart surgery) have been discontinued. He is tolerating tummy time much better than he did before surgery. We have added physical therapy to his schedule twice a week, and he is really responding it. His therapist works with him on sitting, standing, rolling, tummy time, and strength on all fours. He is already sitting up unassisted for as long as he wants to. He is gaining strength, and I know that he’ll be crawling before long.
Before Luke’s sodium crashed in March, he was eating a whole jar of baby food in one sitting, and we were well on our way to having him take all of his nutrition orally and getting rid of the feeding tube. After his sodium crashed, Luke forgot how to swallow food (he has no problem swallowing saliva). We’ve been fighting tooth and nail since then for every swallow of food. This week we have finally started to see some significant progress in this area. We have been working diligently on feeding Luke orally while he’s getting fed through his feeding tube so that he begins to make the association of eating with becoming full. Using my PMV/cap hybrid, Luke’s swallow has become much stronger, and feeding him is a little less of a struggle. We’re beginning to figure out the pattern of give and take that is most effective for Luke to make progress.
Luke is growing so big! He weights about 22-23 lbs. I’m ready for him to start walking so I don’t have to carry him everywhere, he’s so heavy! He sleeps through the night, about 11-12 hours. Since getting off the vent, he uses what’s called a trach collar at night to deliver warm, moist air to him. The combination of trach collar at night and PMV/cap during the day has significantly reduced his secretions, so we’re not suctioning as often. He hasn’t used oxygen at all (except when we visited Albuquerque), since about mid-April. From a cardiology standpoint, he is exceeding Dr. Kao’s expectations. We saw her in June, and she doesn’t need to see Luke again until September. He really is improving every day. He smiles often, and loves his toys and watching his videos. He’s starting to bop up and down when he hears music he likes. He tastes everything. He is experimenting with his new found voice, and most of those experiments come out sounding like growls. Yesterday at church he really started to figure out how to vocalize through his mouth (as opposed to “humming” through his nose). He grins at us every time we walk in the house or we’ve arrived somewhere and open the car door. He amazes me that after everything he’s been through, he always has something to smile about. It makes me appreciate life, my son, and God’s infinite grace.
Thank you all for your prayers, and your constant support and encouragement. We’re still on this long journey. If it weren’t for you, we might have failed long ago. Thank you for lending us your strength and praying on our behalf. We love you.

Rachael, David, and Luke

Sunday

2010-07-11T17:28:00.001-05:00

Luke's speaking valve is completely taped over. He wouldn't tollerate the cap. I tried it, and I can tell a very slight difference between the taped valve and the actual cap. There is some "give" to the taped valve whereas there is absolutely none with the cap. So now what? Add more pieces of tape? Geeze...

Luke's 1st Year Letter

2010-07-11T17:25:00.001-05:00

(I know that this is way past due...I wrote this for Luke right after his 1st year birthday party, but never got around to posting it. Thought you ought to read this one before the next one that I'm about to post. --Rachael)

May 27, 2010
Dear Friends and Family –

Look who just turned one year old! Wow, what an adventure this first year has been for me and my parents! The last time I wrote you a letter, I had just come home from the hospital for the first time, and I was four and a half months old. A lot has happened since then.
Once I finally got home in October, I got to stay home for about three and a half months. When I was eight months old, my heart doctor, Dr. Kao, told my Mamma and Daddy that it was time to start thinking about my second heart surgery. She had me go in to the hospital to make another movie of my heart. The night after I made my heart movie, I got very sick with a virus called CMV. Even though I was only supposed to spend one night in the hospital, I had to stay a couple of weeks.
Finally, my Mom and Dad got to take me home, but not for very long. Before even a day had passed, they decided that I was still too sick to be home, so they took me back to the hospital. That was a very scary trip, because my oxygen got really low, and I had another seizure. I stayed in the hospital for about another week before I went home again. This time I got to stay home for awhile, but my heart and lungs never worked as well as they did before I got CMV. My mom and dad were tired and scared because I had to work really hard to breathe and get the oxygen that I needed. Before I went into the hospital to make my heart movie, I was just about ready to breathe on my own all the time without the ventilator. After I got CMV, I had to use the ventilator again almost all the time.
About two and a half weeks after I got out of the hospital, my Mom, Dad, and Dr. Kao decided it was time to do my next heart surgery, even though they would have rather waited until I had gotten all the way well from having CMV. So I went back to the hospital, and they scheduled my surgery for about five days later. God took very good care of my family during this time. Just a few days before my surgery was scheduled, God revealed to the doctors that I had another infection. The doctors told my parents that if they had done my surgery while I had an infection, I probably would have died. I ended up having pneumonia, and I had to wait about four weeks before I had my surgery. During that time, my lungs got very, very sick. The doctors had to hook me up to a machine that gave me a gas called Nitric Oxide that helped my lungs get more oxygen in them. They had to make it so I was asleep and extremely still all the time.
Finally I got better from pneumonia, and I got to have my second heart surgery. Since the recovery from my first surgery was so difficult, my parents were very scared that this time might be the same. When my Mom left me to wait for my surgery to be over, she kissed me and told me not to do any funny business. I didn’t! God took such good care of me! My surgery went very smoothly, and I got to go straight back up to my room. I didn’t have to go on ECMO or anything! All the doctors (and my Mamma and Daddy) were amazed at how well I did through my surgery and recovery. Part of that day was sad though, because I had to say goodbye to my neighbor in the next-door hospital room. She went up to heaven about an hour after I got back from my surgery. My parents were very sad for that baby girl’s family, but also very relieved that I didn’t go to heaven too.
I got to go home only 10 days after my surgery this time. But only a week later, my parents had to take me back to the hospital because I was acting very strangely. The doctors discovered that the sodium in my body was very low. It was so low that I would have died if they didn’t get sodium back in my body very quickly. I had to stay in the hospital for almost two more weeks after that. Even though the doctors ran tests and didn’t see that my brain had been damaged, I took some steps back in my development, especially in how I eat. Before my sodium dropped, I could eat a whole jar of baby food every day. But now, after two months of hard work, I can only swallow a little bit of cereal.
Just about a week ago, I had to go back to the hospital to have a whole bunch of tissue removed from my throat. The doctor took it all out so that I can breathe out of my nose and mouth instead of using my trach to breathe out. The doctor says that my airway is really small, and I might need to have another surgery on my throat to make it bigger so I can breathe without my trach someday. I hope everybody prays that God will make my airway bigger so I don’t have to have another surgery.
Right now, I’m doing really well and having a lot of fun. I weigh 22 pounds! I still get almost all of my food from my feeding tube, but I’m working really hard on learning to eat solid food again. I only use my ventilator when I’m sleeping at night, and I’m about to get rid of my ventilator completely. I can sit up by myself for just a little while without falling over, and I love sitting and playing in my Jumper or my Exersaucer. My Mamma says she thinks I’ll crawl before too long. Even though I hate to be on my tummy, I’m getting really good at pushing my head up. I used to have to be in my crib all the time, but now I spend almost all day up and about. I even get to go to church every Sunday now. I’ll be leaving soon to go on my first trip out of Dallas. I’m going to my Aunt Hannah’s wedding in Albuquerque. I can’t wait to meet all my friends and family that have been praying for me over there.
A lot of very hard and very amazing things have happened this year. My parents hope that a lot of very good and very amazing things happen this coming year. I want you to know that my doctors have been working really hard to make me well, but even fantastic doctors like mine can’t do everything. God is really the person who is making me well. I want him to have all the credit. God has helped my family through so much. We have learned to rely upon him and take each day one at a time. We are so thankful to be a family at home all together.
Thank you for praying for me and my family. I get better and better every day, but I still like it that you pray for me. My parents still need a lot of encouragement because I need extra special care. Thank you everybody! I hope that God blesses you like he has blessed us!

Love,
Luke

July 4th

2010-07-06T07:58:00.001-05:00

{photos courtesy of Aunt Rebekah}

Thursday

2010-06-24T16:55:00.002-05:00

Home with a vent-free baby about 10:30 this morning. We successfully changed him over to toddler formula, increased his sodium, decreased his use of the pulse ox from constant to intermittent, and decreased his breathing treatments to 4 times a day to 3. We also received a cap for his trach. While we haven't tried it on him yet, we're excited to be moving him forward. Thank you for all your prayers.

Thursday

2010-06-24T16:55:00.001-05:00

Wednesday

2010-06-23T10:59:00.001-05:00

Luke had a rough night last night due to all the equipment they used to measure his sleep, although he passed the sleep study and will be returning home tomorrow without a vent. However, we are changing him over to a toddler formula and his sodium levels are slowly, but steadily declining, so they're keeping him one more night to see what we need to do to keep his sodium stable.

Tuesday II

2010-06-22T17:23:00.001-05:00

Luke is slowly discovering how to make noises with his voice. He has been growling for the last 45 minutes while lying in his crib examining his tiger ("Hobbs"). Yes growling. That's the only way I can describe it. It is really cute.

Tuesday

2010-06-22T17:22:00.000-05:00

Luke's sleep study got moved up from tomorrow night to tonight. We're hoping that discharge might be moved up as well, but nobody's made any committments. So far, Luke is exceeding their expectations. He's hanging out just like normal and still using his speaking valve all day. Thanks for your prayers.

Monday Night

2010-06-22T17:21:00.000-05:00

Just got Luke settled in for night 1 of 3 at Baylor. He's doing just fine, though a tiny bit hyper and fussy due to being in different surroundings. I don't expect to get a lot of sleep tonight, but so far it hasn't been as bad as I was dreading, but then, we're only 11 hours in. I'm remaining positive and expecting everything to go smoothly for Luke's first night vent-free.

Monday

2010-06-21T09:25:00.000-05:00

Headed off to Our Childern's House in a few hours. Dreading going, but can't wait to return on Thursday morning with a vent-free baby and a new SUV.

Wednesday

2010-06-17T07:42:00.000-05:00

Luke is scheduled for his three-night vent weaning at Our Children's House at Baylor starting Monday. We are thrilled to finally be getting rid of that hunk of metal, but dreading returning to Baylor - however short the stay. Please pray that all goes smoothly, that we keep our sanity through this week, and that Luke doesn't take any steps backward from using his speaking valve while we're there.

***************************************

Guess who wore his speaking valve from before he woke up this morning, all the way through Physical Therapy, all the way through Speech Therapy, AND ate a whole cup of cereal? Yup. It was Luke! Hard work is paying off!

Monday

2010-06-15T06:56:00.000-05:00

Took Luke to the cardiologist today. Other than slightly weaning one of his anti-arrhythmic drugs, she didn't change anything. She said Luke's doing great, and she doesn't need to see him for 3-4 months. On another up note, Luke's used his speaking valve for several hours today and a David made him eat a whole cup of cereal. Progress.

Reid Elley

2010-06-14T07:44:00.000-05:00

Please pray for my friends Kristen and Chad. Their nine month old son passed away today after getting an infection after his trach surgery. His parents never got to take him home from the hospital. Please pray for them as they deal with this terrible loss.

Reid's Blog

Saturday II

2010-06-13T07:48:00.001-05:00

Luke's had his speaking valve on for most of the day since about 9:40. We gave hiim a break for about an hour after his nap. All three of us have suffered through crying, coughing, suctioning, and recovering. Our hope is that if we can help him master it today, he'll be able to use it around the clock in the very near future. Our desperate desire is to have Luke decanulated by the fall.

Saturday

2010-06-12T17:00:00.001-05:00

Luke's had his speaking valve on for over an hour today, minus a few minutes here and there to suction and let him recover his sats before putting it right back on. He's protested periodically by holding his breath, but Mamma and Daddy are waiting him out by distracting him until he forgets again that he has it on and starts breathing normally.

Thursday

2010-06-10T13:01:00.001-05:00

Pssst - Luke is sleeping with his speaking valve on. Don't tell him!

Prayer Warriors

2010-06-10T07:12:00.001-05:00

Please pray for my friend's baby Reid. He got his trach surgery a week ago, got an infection, and is really struggling to stay alive. Please pray for him to turn a corner and start getting well. Pray for strength for his parents.

Reid Elley's Site

Monday

2010-05-25T08:02:00.001-05:00

Thank you for your prayers. We put Luke's speaking valve on him today to see what would happen. He breathed in...and out through his nose like he's been doing it his whole life. He looked at us like "Why are staring at me?" He used his valve with absolutely no trouble. We put it on for about 20 minutes this evening. I cried as I listened to my son make happy noises. Praise God! He is awesome and faithful.

Prayer Warriors, We Need You Again

2010-05-23T05:04:00.002-05:00

You have probably seen little FaceBook status posts, but I wanted to write a note about what’s been going on with Luke in the last few weeks.
At the beginning of May, we visited Luke’s pulmonologist, Dr. Gelfand. During this visit, we discussed with the doctor plans for Luke’s progression. The doctor discontinued three of Luke’s medications (two narcotics and one antibiotic which was causing major diaper rash), spread out Luke’s breathing treatments from every four hours to every six hours, and told us to drop Luke’s 4 am feeding. All of this makes caring for Luke quite a bit easier. We also discussed getting Luke off the ventilator completely. Since Luke’s last stay in the hospital, we have weaned him back down to only being on the vent for 8 hours at night. To get Luke off the vent, we will have to admit Luke to Our Children’s House at Baylor for a three night study. For those three nights, Luke will attempt to sleep without a ventilator while the professionals keep his breathing effort, blood gas, etc. monitored. The hope is at the end of the three nights, we will bring Luke home without the need for a vent at night. We will still have to keep the vent at the house for awhile, just in case, but he won’t use it. I’m planning to put a real toy box in that space. We also mentioned to Dr. Gelfand our concern that Luke hasn’t been able to use his Passy-Muir (or speaking) valve (Passy for short).
Short anatomy lesson: Normally, a person takes in air through his nose/mouth, the air travels through the trachea, into the bronchial tubes to inflate the lungs. Inhaling creates negative pressure in the airway. When Luke breathes in the same way, the negative pressure is too much so that his “floppy” trachea and bronchial tubes collapse (called tracheal and bronchial malasia). In the past, Luke’s ventilator has blown air into his airway, using positive pressure to keep his airway open. We were told back in July that Luke’s airways would eventually mature and harden, outgrowing the need for a ventilator and a trach. It’s a little confusing how Luke can outgrow the need for a ventilator, but still need a trach. Think about how relatively tiny your nostrils are. Breathing through your nostrils creates much more negative pressure than breathing through a tracheostomy tube (trach) does. Much the same as if you tried to breathe through a drinking straw versus breathing through a PVC pipe.
A trach is inserted into a person’s throat (trachea) below the vocal chords. In order for a person’s vocal chords to work and make sounds (talking, crying, etc.), air must travel over them. With Luke’s trach, air goes in and out of his body through a hole below the vocal chords, eliminating the possibility for air to travel over them, thus disallowing him to vocalize. A passy is a small valve that you place over the end of the trach. It allows Luke to breathe in through his trach, but air only goes one way; it can’t get out through his trach. This forces Luke to pass air through his trachea, around his trach, over the vocal chords and through his nose/mouth. Since he then passes air over his vocal chords, he can vocalize – babble, grunt, cry— audibly. Our concern has been that we have been trying to put the Passy on, but Luke does not expel air through his nose and mouth like he should. He can’t exhale. He struggles, and cries, and gets mad, but no exhaling, and no vocalizing. A few times he was in such distress that he blew the Passy valve off the end of his trach so that he could exhale (not an easy thing to do). Dr. Gelfand said that it was likely that Luke had built up tissue (called granulation tissue) around his trach in rejection of a foreign object (not uncommon), and that tissue was likely narrowing his airway. The only way to know for sure is to have our ENT (Ear, Nose, and Throat doctor), Dr. Chung, look with a scope.
Last Friday, we consulted with Dr. Chung. He couldn’t do a scope in his office, so we scheduled the procedure for Wednesday the 19th. Dr. Chung told us that the most likely reason Luke hasn’t been able to pass air around his trach is that indeed there is probably tissue blocking his airway. If that was the case, Luke would already be under anesthesia for the scope, so Dr. Chung would laser out the tissue right then. So Wednesday we took Luke to Medical City at 6:30 in the morning. The plan was to have Luke’s procedure done (the nurse told me the OR was slated for 45 minutes for Luke’s procedure), take him to recovery, then back up to the pediatric floor (not the PICU) for a few hours, and then have him discharged that same day. We did not tell Luke the plan for the day, because he has a tendency to change the plan, especially when it involves going home from the hospital. We packed his ventilator, some toys, and other things, just in case we had to do an overnight stay.
Things went surprisingly smoothly. We got updates from the OR throughout the procedure. The anesthesiologist had trouble getting an IV in Luke, but that didn’t surprise us at all. He really is a tough stick. So 45 minutes after he went back to the OR, the procedure got underway. Two and a half hours after Luke went back to the OR, Dr. Chung came out to talk to us. He told us that he had indeed found a large mass of granulation tissue that was completely obstructing Luke’s airway. Dr. Chung could not use a laser or a scalpel to remove it, so he ended up having to pull away chunks at a time until it was cleared. He told us that Luke should now have no problem using his Passy valve and breathing around his trach. We told Dr. Chung about the plans to get Luke off the ventilator. Dr. Chung said that if Luke had no more use for a ventilator, he shouldn’t need his trach either. There should be no reason why we shouldn’t be able to cap his trach (forcing Luke not to use the trach at all and breathe both in and out through his nose/mouth), and then decanulate (remove the trach forever) in a matter of weeks. Despite ourselves, our hopes skyrocketed. I think both of our thoughts raced to a place where we no longer have to deal with trach care, suctioning, nursing, and carrying at least 3 bags wherever we take Luke. Neither one of us expected that decanulation could come so soon.
Dr. Chung took us back to see Luke immediately. He was awake, but extremely fussy, and we worried about how much his o2 sats were fluctuating. We were able to take Luke off of oxygen about a month ago, and he has been satting high 70%s to low-mid 80%s even without oxygen. When we got back to him after his surgery, his sats were fluctuating between low 60%s to mid 70%s. After about an hour in the recovery room where we got to start feeding Luke slowly, we went up to the pediatric floor. As the day wore on, we continued to worry about his lower saturations. Eventually we asked for Luke to get a blood test (BMP) to check his sodium and other levels, mainly as confirmation that we could take him home. When the nurse called the doctor to ask for the order, he decided he would just admit Luke for the night because of his lower saturations. We then told the nurse that we weren’t sure if we needed to admit him. Dr. Stromberg from the PICU came down about an hour later and examined him. Luke was then beginning to sat in the mid-high 70%s, hitting 80%. Dr. Stromberg said that as long as Luke was returning to his baseline sats, he was okay to go home. We left the hospital about 5:00 the same day Luke had his surgery. That in itself is amazing. We thank all of you who prayed for us and for Luke on Wednesday that he wouldn’t do any “funny business.” He didn’t, and we are thrilled that something finally went as planned for once in Luke’s life.
So why the need for prayer beyond the usual? That night curiosity got the better of us, and we tried the Passy valve. After having our hopes up so high, they crashed down. Luke failed his Passy trial. Moved zero air around his trach, turned blue, exactly the same as he did before the surgery. We had no idea why he failed, but we decided to try again the next day before we got too concerned. Thursday’s trial brought the same failure. I had been so excited with the thought of moving so quickly towards a normal life with Luke, and discouragement overwhelmed me.
On Friday David called Dr. Chung to tell him about the trial failures. Dr. Chung told David that the problem obviously isn’t more granulation tissue grown up, because he removed it all, and it seemed to him during the scope that Luke’s malasia (floppy airways) really has pretty much resolved itself. He said that the thinnest part of a person’s airway is a cartilage ring. Luke’s is particularly small. It could be that swelling from the surgery has caused Luke’s airway to close in that area, and the swelling needs to go down before he can use his Passy. Or, it could be that this section of Luke’s airway is just too small to pass air through, period. In that case, there is an ENT surgical group out of UT Southwestern that specializes in airway reconstruction surgery for pediatric patients. The surgeon would perform a fairly extensive operation in which he would cut the cartilage ring and then enlarge it, thus enlarging Luke’s airway. Or, we may just have to wait for Luke’s airway to mature and open.
So we are asking for your prayers that God gives us option #1. We are desperately hoping and praying that Luke’s airway is swollen from surgery, and once the swelling goes down, he will be able to use his speaking valve with ease, and subsequently cap his trach and then decanulate him as the ENT predicted. We long to hear Luke’s voice babbling, and yes, even crying. We long for the day we can de-clutter our lives filled with nursing, trach equipment, suction, and trach care. We believe God can answer this prayer for Luke’s airway to heal and work properly. Indeed, he has even started to answer this prayer. Today, before I got a chance to write this, we heard some of Luke’s first vocalizations. Today, while we haven’t done a Passy trial, he has been able to force big coughs around his trach. His big coughs sound like little squeaks as the air travels over his vocal chords. Each time this has happened, David and I look at each other with doubtful hope. “Did you hear that?” we ask each other. We want it to be true, but we don’t want to get our hopes so high and then have them come crashing down again. It’s easier just to be cautiously optimistic.
Pray with us that over the next few days, if Luke’s airway is indeed swollen, that the swelling continues to go down. Pray that God opens up Luke’s airway enough for normal function. Pray that God does something awesome, and that our family is released from the bondage of this trach in the near future. You and I have sat back and watched as God did much mightier deeds than this in Luke’s life.
Thank you all for your prayers and support. You all hold the three of us up and give us more strength than you realize.

Blessings,

Rachael, David, and Luke

Saturday

2010-05-22T15:49:00.001-05:00

My little boy woke up with a huge grin for his daddy this morning. We read a book (Dr. Seuss!), and now he's in his new Jumper learning how to put pressure on his chubby little legs. David's working at home today, and I'm getting stuff done. I rejoice in mornings full of family, peace, and some sense of normalcy.

Wednesday

2010-05-20T09:42:00.000-05:00

Luke's in the OR now. They got the IV line after some trouble (surprise!), but things are going smoothly. He should be done soon.

Luke came back from surgery and did great. He was really (understandably) fussy when he woke up the first time, and we're still dealing with some fussiness. It has taken a few hours for Luke's o2 sats to come back to baseline. We thought we might admit him overnight, but it looks like we'll be going home in the next few minutes. Luke's sats are stable at baseline, and we feel confident taking him home.

Tuesday

2010-05-19T00:13:00.001-05:00

We have a plan for tomorrow. We're going to work the plan and then take Luke home within one day. We have not told Luke the plan, so he can't change it. We will be at the hospital at 6:30 tomorrow morning for Luke's scope and subsequent laser. We appreciate your prayers.

Friday

2010-05-15T07:46:00.001-05:00

Luke's ENT believes that Luke probably has some granulation tissue narrowing his airway above his trach, disallowing him to breathe around it and progress with his speaking valve. The only way to know for sure is to put Luke under anesthesia and look with a scope. If indeed that is the case, the ENT can laser out the tissue right then. All this taking place Wednesday morning, 5/19.

May 11

2010-05-11T18:28:00.000-05:00

Can't believe it's been one year since I met my precious little boy! Feeling quite reflective today.

Luke's 1st Birthday Party!

2010-05-10T07:52:00.001-05:00

photos courtesy of Aunt Rebekah Taylor and Rona Fitzy

Tuesday

2010-05-05T07:14:00.001-05:00

Luke is movin'! We're getting him on the waiting list to admit him to Baylor for his 3 day stay to get him OFF THE VENT!! We've decreased his breathing treatments to 4 x day instead of 6 x a day. They've discontinued his maintenance antibiotics. We're also scheduling an ENT consult to see if a blockage is causing Luke to not be successful using his speaking valve. Progress feels good!

Tuesday

2010-04-28T12:02:00.001-05:00

Luke not only survived his first trip to the Terrell Zoo (aka Walmart), he LOVED it! It was awesome feeling like a normal family, shopping (with no oxygen or vent) in a real stroller. I think we were even successful at blending in, I don't think people even noticed that Luke is special. Real world, HERE WE COME!