Last night sucked. He was up writhing until well after midnight and it wasn't until we gave 2 pentabarb boluses that he was finally able to calm down. Then he started right back up with the cramping and pain at 6 am this morning. Finally around 9 am, he passed a giant hunk of tissue in his stool and the cramping and rumbling finally went away. He has been sleeping since 9:30 or so now. I am so glad that he is able to rest!
Yesterday SuperDoc ran a serum ferritin test and he came
back off the charts. His level is 2,850 and normal range is 7 to 142.
Yikes! This could mean he has hemachromatosis, which is basically iron
overload. He may have this due to the number of blood transfusions
he recieves. A side effect of hemachromatosis is enlarged liver.
Cha-ching! Abdominal pain is another. Cha-ching! There are
medications they can give J to chelate his blood so he poops the excess
iron out. And then, hopefully my baby will have a normal liver again
and his stomach cramps will be less intense or totally go away! Based
on the tissue sloughing, I think he is still in the throes of radiation
enteritis, but hopefully this will resolve some of the pain and
cramping. I have no idea idea how long it takes before his iron is at
normal levels and his liver starts shrinking again. Wikipedia didn't
help much with that and the docs haven't been by since we got the lab
results. Not like it matters- J never plays by the rules anyway. :)
for all of your liver prayers and keep them coming. There can be some
serious side effects to hemachromatosis and I sure hope he doesn't have
any lasting bad ones! And just for the record, I'm done with "tosis"
illnesses, thank you very much!
EDITED: Um, just talked with the
doctor and it could still be something other than hemochromatosis...I'll
update when we figure it out for sure. Sorry for jumping the gun!!