Sleep study or not so much sleep...

April 16th, 2015: We had Zayne's sleep study last Thursday. It was suggested to us that we do a sleep study in order to have a better understanding on if Zayne still needs high flow. Part of it was Andy and I. We were told probably a month ago or more, that we could continue to wean Zayne to nasal cannula through the night (he currently has been on NC throughout the day for quite some time now). But when the pulmonologist says "I really don't know how to wean Zayne, what do you think, or there is no way to tell if he needs HF or not," you want a more concrete answer than that. So after consulting with another Dr. they decided it was best to do the sleep study. Let's just say the sleep study was far from fun! They had us come in at 8pm (we really could of went in at 10pm, since I have 2 night owls for babies). They hooked Zayne up to about 30 wires, 20 of which are on his head, and then they put a mesh netting over his head. My response to the nurse was "and you expect him to sleep like this?" I finally got Zayne to sleep, maybe around midnight. My guess is he slept maybe 2 hours in a deep sleep, the rest was complete restless, awake and crying, and pissed off. Me, I slept about a half hour. They draw labs at the beginning of the test and at the end of the test. The nurse told me when we left that he looked great all night. When we got there she also told me that "if she did not know our  story she would never know that Zayne is a chronic baby." We hear this so often.

I knew what the result of the sleep study would be (at least I had a really good idea). Today we got the phone call from Zayne's pulmonologist. His first question was "is this Zayne's mother?" as I answer "yes" he said "Well, He's a Champ!" He informed us that his sleep study and his blood gases looked great, unremarkable and that he can come off of high flow! Andy and I are so happy. But, we also take this news cautiously and are guarded. We will celebrate quietly (Some may not understand why). Obviously it makes Andy and I quite nervous. It's hard to make these changes. All Andy and I have been told for the past almost 9 months is how bad Zayne's lungs are, "he has really bad chronic lungs," "he has very bad BPD." etc. Prior to that (from 12 weeks into pregnancy, we were told he would not survive). In a way it has instilled the fear in us. They literally put the fear of death in you. For us we think about "what if he has a set back?" "what if his lungs collapse down?" "will he have to be reintubated?" "Will he survive?" So, are we happy? YES! Are we cautious, absolutely and we will remain gaurded and conservative with this great news. Please respect that.  Although we know how well he is doing and we know he is doing better than anyone expected and he continues to prove everyone wrong, you still can't argue with what the results of xrays, and lungs ct's show.  For now we are going to take this wonderful news and go with it.It's still a trial period to make sure that he will tolerate just being on Nasal Cannula. But, it is a big big step in the right direction.   Zayne is a champ! He is one tough dude!

Hopefully coming off this dang high flow machine will mean less beeping at night (I am not going to hold my breath). Hopefully it will mean a bit more sleep for Andy and I. The beeping and getting up 20x a night is pure insanity. I can't even explain it. It's simply awful.

I will post a few pics, not the greatest quality as they are from my ancient IPhone. For some reason (I blame it on my lack of sleep) I can't figure out how to upload my photos from my camera.

He's A Champ! Go Zayne!