Raul slept most of the day, which I am thankful for as he feels awful
when awake. He has sat up for about 20 minutes at a time a few times
today, but has been asleep most of the time other than that. He even
slept through his ultrasounds and most of his central line dressing
change (photo from after that below). The mucositis is still awful, so
he is using his PCA pump when awake. As of last night he is requiring
blow-by oxygen while asleep, as his o2 sats drop to 90/91 without it. His numbers are fine while awake.
His biggest issue now is his kidney function. His labs have been
checked twice today, and his kidney function continues to worsen. This
morning Nephrology was consulted, and Raul also had a CVP test, kidney
ultrasounds, and a chest x-ray. The CVP was normal. The chest x-ray
showed a bit of fluid, which would help explain his low oxygen. His
kidney ultrasounds showed inflammation, but did not show collapsing of
the vessels (which means the kidneys aren't too dry). His eyes and skin
are also looking a bit yellow, but I don't know if that is because of
his kidneys or liver.
His TPN was stopped and switched to IV fluids to help the kidneys, and his CSA was changed to a continuous drip as it is harder on the kidneys in regular doses. The Nephrologist described this as an acute kidney injury, and it most likely occurred due to being on several medications that are hard on the kidneys (he was on Vancoymcin prior to transplant, was on Celebrex until yesterday, and then has to be on the CSA). He has been tentatively scheduled for a line placement tomorrow in preparation for the need for dialysis. There is nothing to help the kidney inflammation other than time, but his body may require help filtering while his kidneys heal. They will decide for sure tomorrow morning after his labs tonight and early tomorrow.
While his kidney function tests prior to transplant were normal, severe RDEB can affect the kidneys, so they assume his kidneys were most likely affected by EB prior to transplant. In past protocols nearly 100% of EB patients required dialysis, but that number has lowered greatly with the current regimen since they are using less chemo.
His TPN was stopped and switched to IV fluids to help the kidneys, and his CSA was changed to a continuous drip as it is harder on the kidneys in regular doses. The Nephrologist described this as an acute kidney injury, and it most likely occurred due to being on several medications that are hard on the kidneys (he was on Vancoymcin prior to transplant, was on Celebrex until yesterday, and then has to be on the CSA). He has been tentatively scheduled for a line placement tomorrow in preparation for the need for dialysis. There is nothing to help the kidney inflammation other than time, but his body may require help filtering while his kidneys heal. They will decide for sure tomorrow morning after his labs tonight and early tomorrow.
While his kidney function tests prior to transplant were normal, severe RDEB can affect the kidneys, so they assume his kidneys were most likely affected by EB prior to transplant. In past protocols nearly 100% of EB patients required dialysis, but that number has lowered greatly with the current regimen since they are using less chemo.
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