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.
Monday, February 21, 2011
Drug Levels
So I forgot to mention this. When Lilia was in the ER they did a drug level on one of her anti rejection meds. Turns out that it was 100!!! To give you an idea of how high that is, its suppose to be between 8-10. So for the last few days they have had to hold the med and wait for her drug levels to come down. which means being poked every day. Since its policy to no longer take blood from the IV, she gets finger poked every morning. Shes not happy about that at all.
it probabaly happened becuase she she went so long without food in her stomach, was probabaly a bit dehydrated, etc.... lukily they caught it though.
it probabaly happened becuase she she went so long without food in her stomach, was probabaly a bit dehydrated, etc.... lukily they caught it though.
Sunday, February 20, 2011
at least a week
So apparently the bacteria in her blood that the culture showed means she needs at least a week of iv antibiotics. So at the earliest we will be out of the hospital is Thursday.
Not too impressed with this news.
on a happier note, Lilia kept her last feed down!! so for now we are just going to continue to run it slower and hope that helps.
Not too impressed with this news.
on a happier note, Lilia kept her last feed down!! so for now we are just going to continue to run it slower and hope that helps.
Saturday, February 19, 2011
Admitted
So you all know lilia likes to cause havoc on holidays.....well she was admitted into hospital last thursday and will probabaly still be there on family day.
it all started with the stomach bug we all had, however ours lasted 24 hours and Lilia's lasted 10 days and counting....finally on the 10th day we took her to ped (again we had taken her in a week ago as well) who took one look at her and told us to take her to the hosptial. She has lost 2-3 lbs, was now coughing something fierce, spiking fevers off and on, was very pale.
So we took her to the ER and her sats were 92...not too bad, but not as good as normal. the chest x ray (which she is an old pro at) showed pnemonia on both the left and the right lung. So she was admitted.
Lukily she doesnt need 02, however she does have an IV in for the IV antibiotics. which right now is a broad spectrum one.
they did do blood cultures (which is growing something) and a nose swab (which showed she has a cold...so shes stuck in isolation) but we wont be allowed out untill they know what the blood culture is growing. So that sucks. Shes very cranky being stuck there, even starfall.com is starting to bore her.
they did start her feeds back up, and she made it through 3 of them without puking. but then she puked up the 4th one. So they ran her 8pm feed over 2 hours (instead of 1) and we are keeping our fingers crossed. If she pukes again they will have to call the doctors.
anyways so now that we have net in the room, I will try and keep her blog up to date on whats going on. which hopefully wont be too much more.
it all started with the stomach bug we all had, however ours lasted 24 hours and Lilia's lasted 10 days and counting....finally on the 10th day we took her to ped (again we had taken her in a week ago as well) who took one look at her and told us to take her to the hosptial. She has lost 2-3 lbs, was now coughing something fierce, spiking fevers off and on, was very pale.
So we took her to the ER and her sats were 92...not too bad, but not as good as normal. the chest x ray (which she is an old pro at) showed pnemonia on both the left and the right lung. So she was admitted.
Lukily she doesnt need 02, however she does have an IV in for the IV antibiotics. which right now is a broad spectrum one.
they did do blood cultures (which is growing something) and a nose swab (which showed she has a cold...so shes stuck in isolation) but we wont be allowed out untill they know what the blood culture is growing. So that sucks. Shes very cranky being stuck there, even starfall.com is starting to bore her.
they did start her feeds back up, and she made it through 3 of them without puking. but then she puked up the 4th one. So they ran her 8pm feed over 2 hours (instead of 1) and we are keeping our fingers crossed. If she pukes again they will have to call the doctors.
anyways so now that we have net in the room, I will try and keep her blog up to date on whats going on. which hopefully wont be too much more.
Tuesday, January 11, 2011
Lilia's lung scan...and procdure
So a couple weeks ago we did a fairly routine tests. a Lung perfusion scan. its to see how mcuh blood flow is going to the lungs. We her cardiologist called a week later to let us know that Lilia;s left lung was only functioning at 6%. they thought that maybe her PA was blocked by maybe her stent (which is in her airway) or a blood clot. So they rushed us to sick kids and she had an ultra sound, an x ray, and an echo. then a week later we came back to sick kids to have a procdure done in the cath lab to see what was going on in that lung, and maybe stent it if there was a blockage like they thought.
So after a stressful 2 hour prcedure (that she was put out for) they came back to tell us that in fact there wasn't a blockage at all so they didnt do anything. Lukily that meant after 6 hours in recovery room she was allowed to go home.
However the bad part is we thought this would explain why her lung is collapsed and fixing it would save her lung. Now we have no answers as to why her lung is not working, and it seems to be another check for getting rid of the lung all together.
We are currently wiating to hear back from ENT to see what the next step is.
So after a stressful 2 hour prcedure (that she was put out for) they came back to tell us that in fact there wasn't a blockage at all so they didnt do anything. Lukily that meant after 6 hours in recovery room she was allowed to go home.
However the bad part is we thought this would explain why her lung is collapsed and fixing it would save her lung. Now we have no answers as to why her lung is not working, and it seems to be another check for getting rid of the lung all together.
We are currently wiating to hear back from ENT to see what the next step is.
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