So now we might be dealing with some sort of liver issue. Apparently her enzymes are high (i think thats right) and it was seen to be normal for how sick she was the last couple weeks but since shes been better they have gotten worse. Which doesn't make a lot of sense to me. and has her doctor concerned. So next week (tues) we have to go for MORE blood work (poor kid, todays blood work was a friggen nightmare to get) to see whats up.
untill then we are to stop her high cal formula and give her an extra can of the normal stuff in a day to try and get her weight back up (she hasnt gained a thing back since she's been home).
apparently the liver issue is also why her poops have been white.
really if its not one thing with her its another.
Thursday, March 3, 2011
Drug levels still not great
So Lilia was poked on monday and we got word that her rapamune (anti rejection med) was still not great. I was wrong ebfore her level is actually suppose to be between 6-8 and it was at 19.6 on monday. so we were told to hold off the meds for 2 days then take her back for blood work.Then start giving her the med again and in 5 days to another med level.
well today was BRUTUAL for being poked. She would have none of that at all. She fought really hard for somone so tiny. but Carol (who is awesome) managed to still only do it in 1 poke. And after Lilia got a little stuffed bunny, which cheered her up right away.
anyways so i am NOT looking forward to the poke on tuesday.
well today was BRUTUAL for being poked. She would have none of that at all. She fought really hard for somone so tiny. but Carol (who is awesome) managed to still only do it in 1 poke. And after Lilia got a little stuffed bunny, which cheered her up right away.
anyways so i am NOT looking forward to the poke on tuesday.
Lilia's Home!!
So in the excitment of her getting released last week i totally forgot to update her blog. So here goes.
She was released from the hospital last thursday.
so they told us at 9 am we could go as soon as they got the drug level back (we had issues with it, she was poked every day we were there for drug levels) then we found out we wouldnt know till 2-3 pm what the levels were! we had to get rora from school, and was afraid they would discharge us then with no car to go home....so we told them at 2:30 we were leaving anyways. and we did...just walked out. there was NO reason to keep us for so many hours based on soemthing we usually get done as an out patient anyways. we were pissed. i called t.o myself and got them to get the results and tell us what to do med wise (which is all they docs were going to do anyways). poor girl has to be poked again on monday....but at least as an out patient now.
so finally the doc finds out we left and he actually called us at home to apologize for making us wait so long. SO now I am not so pissed about the whole thing.
She was released from the hospital last thursday.
so they told us at 9 am we could go as soon as they got the drug level back (we had issues with it, she was poked every day we were there for drug levels) then we found out we wouldnt know till 2-3 pm what the levels were! we had to get rora from school, and was afraid they would discharge us then with no car to go home....so we told them at 2:30 we were leaving anyways. and we did...just walked out. there was NO reason to keep us for so many hours based on soemthing we usually get done as an out patient anyways. we were pissed. i called t.o myself and got them to get the results and tell us what to do med wise (which is all they docs were going to do anyways). poor girl has to be poked again on monday....but at least as an out patient now.
so finally the doc finds out we left and he actually called us at home to apologize for making us wait so long. SO now I am not so pissed about the whole thing.
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