I wish you could have seen Luke eat today.
We’ve been finished with the day patient feeding therapy program at Our Children’s House at Baylor for two months now. It was quite a difficult and stressful time for our family, but we’ve been through much worse, and it was very much worth the time and effort. Since then, we’ve been plugging along with our newly learned feeding and behavior modification skills, not making much progress very quickly. Last week we were still just “dipping” the spoon into the pureed food so a thin layer of food clung to the spoon, not even what you would call a “bite”. Even at that amount, Luke was still frequently pushing half of that amount out of his mouth when he would swallow. Two months after finishing the feeding program, although feeding time has been going a lot smoother and easier, Luke was still only taking in about 10g (1/3 oz) in a 20 minute mealtime.
Yesterday and today have been so much different! Last night when I got home from work, David told me that at Luke’s evening meal, he was feeding him “big bites” and that Luke had finished all of the pureed green beans left over from the container (I don’t know the exact amount, but quite a bit). This morning I decided to weigh what he took in: 28 g at the first meal and 24 at the second—that’s about an ounce each meal! That may not seem like a lot to you who have kids who are champion eaters, but that’s triple what he was taking in last week!
It just seemed that yesterday it “clicked” and he just “got it.” He suddenly figured out how to keep the whole bite in his mouth while swallowing. He still is occasionally pushing out some of the bite, but these times are more the exception now than the rule. I’m so proud of my sweet boy!
Now the airway news. On Feb 13 Luke went in for another bronchoscopy. The ENT wanted to take a look to see the status of Luke’s airway so we could start formulating a plan for possible decannulation (getting the trach out) this summer. The plan was just to take a look, but while they were in the OR, the ENT called us and conferenced with us. He believed he could see the problem holding us back up until this point: a chunk of floppy tissue that was partially obstructing the airway. Luke is just now big enough, and the airway big enough for Dr. McClay to get the cutting instrument in place to cut away the tissue. We gave him the go ahead to see what he could cut out.
After the surgery, Dr. McClay came into our conference room smiling pretty broadly. He started his report with, “I’m very excited…” He told us about cutting away the floppy tissue. He told us that he expects Luke to do very well with the capping, even while asleep for his naps. He laid out a plan for us that we would schedule a sleep study at our post-op visit and then pending those results, start looking at decannulation.
Illness threw a wrench in Luke’s capping progress, as he’s had a come-and-go fever over the last few weeks. He’s also been congested, so his toleration of his trach being capped has been pretty spotty.
We visited with Dr. McClay today for Luke’s post-op visit. McClay was disappointed that Luke has been sick and confirmed for us that he has an ear infection in both ears and is probably getting over a cold to boot. McClay approved of the decision our pediatrician made on Friday to put Luke on antibiotics. He wants Luke to be healthy for a good four weeks before the sleep study so that we can make the results as accurate as possible. McClay also explained that when you cut out tissue like he did on the 13th, granulation tissue (somewhat like scar tissue) can grow up where the tissue was removed, making it necessary for removal of the granulation tissue as well. We’ve dealt extensively with granulation tissue in Luke’s airway before, so this is nothing of a surprise to us.
Our spring plans go as follows: in three weeks (March 30) we’ll visit Dr. McClay again to check in. At that time based on our observations and McClay’s examination, he’ll make the call of whether or not he thinks he needs to do another bronchoscopy and remove any granulation tissue that’s grown. A week and a half later (April 9) Luke will go in for the bronchoscopy if necessary. We’ll give Luke approximately two weeks to heal (it usually only takes a few days, so we should be golden there). Then Luke will go in for a sleep study where he will be studied overnight sleeping both with his trach open and capped and compare the two results. The sleep study hasn’t been scheduled yet, but should be scheduled in the next couple of days. If the sleep study results are all that we’re hoping and praying they are, Luke will then have another bronchoscopy to check to make sure everything’s looking great. If it is (and that’s a big ol’ IF), Dr. McClay will decannulate Luke at that time. Folks, that means that Luke (and Mom and Dad) could be getting the very BEST birthday present a three year old could ask for: a plastic-ectomy!
We are so hopeful about all of these plans. We have definitely heard hopeful plans about decannulation in the years past, so we continue to be cautiously optimistic. We ask that you join us in prayer that things go smoothly, seamlessly, and perfectly according to our Master’s mighty plan. Of course we want decannulation for Luke and everything that goes with it for our family, but we know that God has a plan for our little boy, and more than anything we want things to go according to that plan. Please pray for endurance and courage for David and me as we begin “spring surgery season” again. Please say a prayer of thanksgiving for the progress Luke has made so far in both his breathing/airway situation and his eating. We are so thankful for God’s mighty hand in our lives. We always pray that Luke’s life is a testimony to you of God’s great power and amazing love.
Blessings,
Rachael, David, and Luke
