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
