Although, he had a really rough night. At midnight Oakes was put on a continuous drip of paralytic because he was having fits, but was still d-stating. We got a call at 3;30 am that his nurse changed his diaper, and just that stimulation and stress on his already paralyzed body was too much. His numbers dropped and they had to bag him. In the past paralyzing Oakes would let us gain control of his little system so having him d-stat while paralyzing him was a new all time low. Greg and I were up all night talking about what was going on and calling in to get hourly updates. At 9am they did a bronch procedure at his bedside. I was beyond stressed wondering how he would tolerate a camera going through his airway if he wouldn't tolerate his hiney being wiped, but he did great. His airway looked like a "wet sponge" according to Dr. Michelson. So it is swollen and wet, but no obstructions. And the best part was that he tolerated it just fine. And actually since then his numbers have improved, so passing that little camera through is airway must have helped a little.
Right after the bronch, our old pheresis nurse Emily came back to set up for dialysis. They started at about 11am, and right now, at 12:20 they have already taken off 40ml of fluid from Oakes' belly. He is paralyzed, and tolerating this just fine. His numbers are great, and honestly this is pretty boring. Praying that the day remains this way.
Thanks for all of the love and support.
More updates to come!
XOXO, Becky
Thankful for boring. Thank you for keeping all of us up to date with Oakes. I know that's hard to do while you're having tough days.
ReplyDeleteMichigan love,
Kim
You all have already been through and beaten so much. I know Oakes will figure out how to get through all of this too, with a little help from his best Doc friends, some love from his nurses, and of course, more love from you. We will all continue to take deep breaths, bathroom breaks, and heart listens for him.
ReplyDeleteThey can't figure out what the fits are and everything looks ok - maybe that is part of why he's having fits? I don't see why some of this isn't as simple as test feeding him - I know this is hard to ask or wonder, but he's been in their care so long, maybe some things are simple and they are having trouble seeing it? I just feel compelled to point this out; I absolutely know you are doing everything you can to do the best for him, no question. They have been right before, but also they have been wrong - you are worn down and there so much, don't stop questioning and pushing them.
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