Thursday Sleep Study
So we have our big sleep study on Thursday. Here is our history with sleep studies:
1st one showed he needed O2 and might need a vent (strange since he was released from the hospital 1 week before with no O2)
2nd one showed he really needed the vent due to CO2 retention.
3rd one showed we could lower the vent settings and get rid of the O2 (Yeah))
So now this 4th one is to see if we can get the vent to go away. Now I have mixed feelings about this. I am excited because we are trending towards the better, but I think I might be getting my hopes up too high. My other issue is has anyone ever gotten a PRN order after a vent is no longer needed due to a sleep study? I only say this because sometimes he gets so angry and builds up so much secretions that then he gets even more mad which just brings this huge cycle on that we then put him on the vent and he calms down within 10 seconds. I have become a little dependent on the vent for that and feedings.
If he is feeding and needs suctioned at all, he will throw up if I don't get to him fast enough. Basically coughs, which gags himself (I feel he has too long of a trach and the ENT says no way and wants to up-size him). So we tend to do more feedings on vent than off during the day. I am not worried about night, he can be off vent and he won't get secretions if asleep. So we can feed him with no issues at night.
So has anyone gotten a PRN order for the vent? That is what I am hoping for. Off of the vent the majority of the day, but if he has one of his fits (right now this only happens once or twice a week) we can put him on the vent and if we see the feedings becoming a real issue we can use the vent for daytime feedings until we reduce the size of the trach for capping. I think once we reduce the size of the trach for feedings we should be ok with the throwing up. I am convinced that it is the trach size because we put a Neo in to heal up a wound right below the trach and the throwing up pretty much went away for gagging reasons. He had it for other reasons (propranolol makes him sick so around his 2 PM meds he sometimes gets sick), but he no longer gagged himself. In fact we moved his meds around a little and he was now throwing up 3 times a week instead of 3 times a day!!! But we don't have enough Neos to keep him in a Neo all the time. Plus the ENT is already pissed we haven't moved him from a 4.0 to a 4.5.
Sorry for rambling on....