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!