Wow,,,an update

wow i really have not touched her blog in sooo long. well for those who were worried about her liver...that resolved itself looooong time ago lol. we dont know why the levels were wonky, but they fixed themselves. welll my princess Lilia is now 7 years old...can you believe that? she turned 7 in December, we had a rainbow birthday party for the family and for the first time ever she had a class party. They play glow in the dark minigolf...which was interesting lol. health wise shes doing ok...shes had pnemonia off and on..some years were better then others. the biggest news is her feeding tube was removed!!! yay, we hadnt used it in a year so we just yanked that sucker. shes still not eating much REAL food but she does eat the formula that was going through the tube orally. so no point in having the tube. it blew her mind when we removed it. However she is just getting over pnemonia again, and even after the infection was gone she was pale and had lost 2 lbs in about 2 weeks. not good. so her ped told us to up her formula an extra box, so she takes 5 right now instead of 4. 2 of them at school. if shes still pale and tired when we go back next week they will do blood work to check on things. but it just might be becuase of the weight loss. so fingers crossed shes gained enough weight to make the docs happy when we go back. School wise, she struggles. A LOT. we had her talk to a pyschologist that specializes in deaf children (he himself is deaf) and after a ton of work...he was unable to dx her. he is pretty sure she is ADHD, since her attention span is like 2 seconds long. (and other reasons) and her memory sucks. anyways we have a lengthly reposrt, and basically he thinks she might have other issues but wasnt quite sure what. well you know Lilia....shes always been unique LOL. the transplant pyscholgist has a copy of the report and hopefully we will have an appointmnet with her soon to discuss what to do next. her hearing, well we were finally able to get her to do the test properly!!! and it actually showed her hearing is worse then what we thought, its a moderate loss in the low ranges and a perfound loss in the high ranges. i think it was like 105 dp loss. we were told she would probably qualify for a cochelar implant but decided against that. (save that for another post on its own) so we got her new aids and turned the volume up. shes is doing a bit better. speech is still slow though. her asl is amazing, but even that is behind according to her teachers. anyways tomorrow she gets new glasses, and i will post a pic then! oh the new template is green for organ donation and the butterfly quote because i believe the transplant was like her turning into the butterfly. so now butterflies are kinda my think. the pic of the ribbon butterfly, i want for a tattoo! anyways good night everyone. i swear i will reallllllly try tp keep you updated on our amazing miracle baby.

Liver issues

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.

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.

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.

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.

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.

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.