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

Monday

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

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!