Yesterday was day #13 on the inside here at CHOP. Things were looking pretty good in the morning. There was even talk of Audra going home today if everything continued in the right direction. She had been off the IV nutrition for a couple days and her labs looked good so about 11:00am she had her PICC line removed.
Here she is looking good right before the PICC removal
Then, not even one hour later, she threw up...
The doctors weren't concerned at first. Everyone has a free pass to vomit once a day they said.
And then she threw up again...
...and again
...and again.
By late-afternoon her blood pressure was trending higher, she was vomiting nearly every half hour and she was feeling quite terrible. Things started getting very worrisome about 8pm when her blood pressure hit 170/100 then 217/115 !! Audra was so restless and anytime she moved or was disturbed she said "ow"...which she NEVER says.
It was a flurry of activity in her room for a while...lots of nurses and doctors coming in and out. A new IV was placed, bloodwork and cultures were sent, and extra IV fluids were given. Things were getting really close to calling the ICU team to evaluate Audra.
But first, the doctors here called to discuss their concerns with Audra's immunologist and GI doc. They also called the nephrologist (kidney doctor) to see what they should do for her blood pressure through the night. They recommended 2 doses of clonidine...the new extended release version they had just started the night before and an additional smaller dose of the faster acting clonidine.
About midnight things started to settle down a bit. Her blood pressure was trending down to a safer range, and she was able to finally fall asleep.
She and I were able to get some decent rest overnight and she is still asleep now. Her blood pressure came down maybe too much overnight...now it's 80/40.
I am sure today will be a busy day with lots of Audra's doctors weighing in.
Our plan from yesterday is out to window. It's looking like we will be here for a bit longer now. It's so frustrating that we are right back to where we were last week. But clearly we have not figured this sweet girl out yet. I think everyone was happy that the vomiting resolved, but we still never had a reason for it in the first place.
So this time we need an answer.
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