Saturday, May 28, 2011

Cincy in Review

It was a busy few days in Cincinnati this week, with lots of appointments and info, but nothing a good old bulleted list can't handle.

Tuesday: Pulmonary
- The pulmonologist confirmed that some of the previous suggestions for Collin's central sleep apnea problem are not in his best interest (ventilator, caffeine citrate, maybe even oxygen).
- He also confirmed that he saw improvement in the reports from each of Collin's previous 3 sleep studies.
- He suggested a trial of bi-pap (a breathing machine I will explain later) during our sleep study that night, with the hope that it would actually fix Collin's apneas rather than just cover up the effects of them with oxygen, thus giving him more restful, efficient sleep.

Tuesday-Wednesday: Sleep Study
- We had wonderful nurses, techs, and facilities during this sleep study. It was a welcome change to our previous experiences.
- The bi-pap mask did not go over well with Collin and he took a long time to calm down enough to go to sleep. Once he did, the nurse came in far too often for my taste to adjust the mask in order to get the maximum effect. I understood the need, but I couldn't help but wonder how they expected to get enough recorded sleep to make a determination if they were constantly waking up the patient.
- We won't get any results for 10 to 14 days.

Wednesday: Recovery
- We stayed with Nana and Grandad on the Farm while we rested up from an unrestful night, scrubbed the glue out of Collin's hair, and got ready for another busy day.

Thursday: Nutrition and GI
- The ketogenic dietician was pretty impressed at the way we have managed Collin's diet, balancing the ketogenic diet with the blenderized diet and all of the various requirements that go with each. She made some scheduling and feeding suggestions that I am in the process of implementing, but had nothing to contribute concerning pooping or retching.
- The GI doctor basically said the same thing: 'wish we had more to offer concerning retching.' It's a common problem with no easy answer and sometimes no answer at all. It's wonderful that the Prevacid has made such a big difference (C is consistently happier and more himself now, but still retching during bowel movements and a few other random times).
- Our plan is to give Collin some more time on Prevacid to see if his overall decreased retching actually makes it decrease even more (the vagus nerve can apparently get aggravated by retching, leading to more retching, so the theory is that less retching would make it less sensitive). Once we start growth hormone (hopefully next week), we'll see if it has an effect on his appetite (increased appetites seem to reduce retching as well). If we're still having issues, there is a drug we can try that increases appetite and relaxes the top of the stomach in some children.
- With Collin's improvement on Prevacid, the doctor didn't think it was necessary to put him through any testing at this time (scope, impedance probe, upper GI, etc.). This decision was Collin's favorite part of the trip, aside from the squeaky airgun they used to dry the glue on his sleep study leads - he couldn't stop squealing and laughing about that.

In summary, we are hopeful to get good news from Collin's sleep study that will allow us to even further improve his sleep quality, and even though it was disappointing not to receive any revelations in how to eliminate Collin's retching, it's always good to hear that you haven't been missing something all along.


  1. We've been thinking about you all so much lately. Would love to get together sometime. Summer break's coming up for me (one more week!)... Let me know if anything works for you all.

  2. That was one of the best bulleted lists I've read in a long time Short, sweet, and with no unfortunate detours and some hopeful leads. If you need groceries or dinner, don't forget to call!