Confusing?? - April 24

"So the sleep study results are...confusing." That's almost as fun to hear as "inconclusive".

Here's what they gathered from the study:

During the sleep study you had "significant apnic events and desaturations" with just the trach collar. But you've not had them in the NICU since the tracheotomy. They tried putting you on CPAP and on BiPAP (read about the difference here) and there were still several concerning episodes. Which hasn't happened in the NICU. So why are they happening in one place and not the other? They don't know.

The more important question is why you're having the events to start with: are you not able to take a deep enough breath because of lung capacity issues or because you aren't able to fully expel the last breath, causing your breaths to get more and more shallow. To (hopefully) figure out which it is, they've put you back on the ventilator for the weekend. You're on the lowest settings you can be for both pressure and oxygen and they're going to play with the levels of both over the weekend to see which you respond to best with adjustments. Worst case scenario: they don't figure anything out and you go home with oxygen and either the ventilator/CPAP/BiPAP for support while you're sleeping and/or 24/7 (I vote no for that option). Best case scenario: they're able to completely wean you off of the oxygen and any needed pressure support because you perform fabulously while you're in the NICU. 

We shall see.

You weren't too thrilled with going back on the ventilator. The RT said when she came and started messing with the set up and hooking everything back up you got a real nervous look in your eyes and started moving your hands around and then tucked them in close under your neck. When I got back after they had you all set up you were holding your hands like you had been nervously wringing them and looked at me like "what's going on? Why is that thing back???"

Sorry Baby Girl. Let's have a good weekend and get rid of it, ok?

In other news: I put a tube in your throat today and didn't freak out (externally) about it! The trach change went well - and we plan to do one next week on Monday and Wednesday for practicing purposes. And next Saturday, Daddy will be at the hospital to get some basic training on suctioning, trach CPR and to watch us change the trach out so that he at least knows how the process goes.

PT and ST came and played with you and you loved the attention...as usual! You smiled and wiggled around and started kicking your legs when they were talking to you and working with you. Tomorrow we'll work with the speaking valve again - I'm excited to get to hear you!

That's all for now. Still no real results and still no plan or timeline for discharge. Tomorrow is a new day and we've got big plans, as long as I can get through the Fiesta Parade traffic!