This kid is giving me a heart attack.  Yesterday afternoon is was having some desats which is not unusual for him lately.  He sounded very wet and he had only put out 20cc of urine the whole day.  The nurse ended up putting him on bipap to see if it would help with the desats.  Typically, Avery will not tolerate the bipap when he is awake.  This time he did not fight which we now know is a bad sign.  Honestly within a 15min. timeframe he went from looking decent to gray and having major desats on the bipap.  Even at 100% O2 he was still satting at 83-84% for a good 2 mins.  I think my heart stopped just looking at the monitor and praying that he would come up.  Thank God he finally did but he needed alot of support to do it.  It is really really scary.

He was given lasix to take some of the fluids off him and hopefully dry up some of the fluid in his lungs.  Blood cultures, urine cultures and a slew of labs were done.  He was started on IV vanco and meropenum while ruling out sepsis.  He remained on bipap on higher setting.  Overnight they kept trying to wean his settings but then his blood gases kept tanking so he is back to higher than his normal settings.  He also spiked a temp during the night which is obviously a sign that some infectious process in going on. 

In light of all this, the CTscan is going to be posponed until we can get a handle on his respiratory status and fluids. It is just not safe to have him intubated for a procedure when his lungs are already sick.  It would make his chances of extubating him much more difficult.   He is still on bipap and not fighting it at all   So he is definitely sick with something but we just have not found it.   So we are in a holding pattern right now.  I just hate this disease so much.  I can feel him slipping away from us little by little and I am helpless.  There are no more simple hospitalizations. Instead they are complicated stays with possible ICU transfers.  It is going to be a busy week b/c I need to work and it's Janessa's 10th birthday but we will work it out somehow.  We always do.