Darling Ambrose, while very stable most of the time, has had several unexplained desats (drops in blood oxygen saturations indicating he's not getting enough O2) which have occasionally required bagging (manual ventilation by ambu-bag) to get his sats back up. Then once he was over it, he was absolutely fine or even better than before. Last night, or rather this morning at 12:45, he had an episode which did not resolve with bagging. Bagging would bring his sats up to 100 but when I would stop and switch him to CPAP with maximum oxygen (10 L- a lot!) his sats would fall again. We bagged him off and on for 45 min and, impending blizzard on the way, headed out to the BMH(my lovely local hospital, and employer) ER. Of course by the time we get there he is stable and able to start coming down on his O2. Despite being stable I feel that something is obviously going on and want everyone to get their heads together and figure this thing out. So by the time the DART team arrived at BMH it was 4:15 am and I had to drive myself up to DHMC in the snow. Boy was I tired. We arrived at 5:30 am. He has been doing wonderfully ever since. Thank God!
I have requested numerous consults ( quick brain MRI and consult with neurosurgeon previously scheduled for next week to check his C spine "retrolisthesis" hopefully will occur tomorrow), scope by ENT doc to check trach accompished, (looks OK. I had thought the extra long length of his custom trach was causing the coughing he experiences often after moving and sometimes precipitated spitting up. He is willing to try a slightly shorter trach with the same custom angle.), consulted with pulmonologist, consulted with GI doc - will be doing an upper GI tomorrow to look at degree of reflux and possibly get info about if his Nissen fundoplication (which should prevent reflux) has loosened up. If that doesn't give enough info may then persue a PH probe test.
Hopefully he can go home in a couple days. He has some crackles and coarse breath sounds but all labs and vitals seem OK, no fever, no pneumonia. Elevated CO2 levels. Will try higher peep CPAP tonight and repeat blood gas in the a.m.
Ahhhhhhhh. Hope to get some sleep tonight and hopefully some ideas. I fear we may leave with several possible theories but no answers or solutions.