Tuesday

Luke struggled a little more than yesterday wearing his cap for his nap today, but still made it a full hour! Not liking the wheezing that went on today, but still pleased that we're continuing to move forward. Can't wait to hear what the pulmonologist and the nutritionist have to say tomorrow!

Sleep Study

Approx 3 am


After hours of five minutes on, 15-30 off with cap, Luke finally seems to have hit a stride around 1:45. He's had the cap on since then with several very brief times of wakefulness, pulling the cap off, then me getting it back on. The plan is to take the cap off at 3:00 and let him sleep the rest of the night without it. While I don't think we've done well enough to warrant decanulation right now, Luke has done far better than I expected. I think there's a light at the end of this tunnel down there!

Thursday

Luke is doing a little better today with the help of some extra breathing treatments. Fever's stayed away since Tylenol last night. He finally fell asleep a few minutes ago and is wearing the cap. His breathing is a little less labored than yesterday. Thank you for your prayers, maybe we have a shot at a sleep study on Saturday after all.

Wednesday (prayers please)

Luke's fever responded to Tylenol, but he's still not feeling 100%. o2 sats are going up and down some, and his heart rate continues to be a bit elevated. Giving a breathing treatment with the cap one was a nightmare. We sure appreciate your continued prayers. We are resting in God's mercy and infinite grace. I just wish I knew what his plan is for that little boy this summer...


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Well, looks like Luke is getting sick. Sneezing, runny nose, and a fever. He's not tolerating his cap well awake or asleep. I don't understand why this is happening, and I don't have high hopes for making the sleep study on Saturday. Delaying the sleep study means we're delaying decanulation indefinitely. We need God to intervene or provide comfort in our disappointment.

Tuesday

Approx 4:30 pm
Luke slept with his cap on for his nap for about 15 minutes. His sats and heart rate didn't really change for when he slept with the cap off, which is good. But his breathing was still very noisy and labored, which is concerning. Possible and probable that he's experiencing some swelling in his airway, making it more difficult to breathe with the cap on. Hoping tomorrow is better because he can't pass a sleep study that way. Relying on God, who is the only one who can get Luke to sleep comfortably with the cap on at this point.
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Approx 9:30 am
Neither Luke nor I really slept well last night, but we got through it. Got in another breathing treatment with the mask and the cap while he was playing with the iPad. Luke's wearing his cap this morning, although he's been taking it off quite a bit. I really don't care if Luke has the iPad and I have to watch Elmo's World all day if it means success with the cap this week. Some other parent tell me that's okay. Anxious to see how he does at nap time. Saturday's Sleep Study is coming so quickly.

Monday, April 9th

Approx 8:30 pm
Home now. First steroid breathing treatment through the nose and mouth took both David and me plus the iPad, but was a success. Luke got out of surgery at 4:00 and started wearing his cap again by 6:00, fastest that's happened to date . hope is sneaking in that he'll be sleeping with the cap by tomorrow . we'll see ...
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Approx 4:45 pm
Just talked to the doctor. Luke is out of surgery and we're waiting for him to wake up. Took an hour to get an IV. Doc cut out granulation and floppy tissue. Gave us a good prognosis. Doc still thinks Luke will be decanulated this year some time.
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Approx 2:30 pm
They just took him back to theOR. It's been awhile since they let him have any fluids, so we're hoping that getting an IV won't be a problem. Shouldn't be a long procedure once they get an IV line.
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Approx 12:30 pm
We're still in pre op . There's still one kid ahead of Luke . Waiting on the Lord .
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Approx 9:30 am
Headed to the hospital soon. Although it means getting home later, it's nice to sit and drink my coffee at home on a surgery day for a change. We'll keep everyone updated as the day goes on. Pray that we can remove a bunch of tissue (to make breathing easier for Luke) and for the steroids to keep the regrowth away.

Spring Plans

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