Make a Wish!

So Lilia was approved for a wish through make a wish! so excited! in a couple weeks they will be coming over to fill out more forms and see what wish she wants. i am betting she will pick Disney World. will keep you updated!

a new medication for lilia

she still occasionally tries to sufficate sebastian. anyways shes watched very carefully and stopped right away. we had a team meeting in t.o last week. we had transplant social (tx) worker, tx pyscologist, tx. pyscatrist, and her school principal and the school for the deaf pyscologist present. we had a long chat. and decided to try and medicate her for her aggressions. her ped is starting her on respirdal today. a low dose to see if it helps (this was okayed by the tx team as well). its not only this new behavious problem but she has issues with school too. last year she gave a boy a black eye, pulled hair...was very agressive. on the bus shes pretty hard to manage too (surprised she hasnt been kicked off yet). we have questions as to wether she is bipolar...but the shrink said its too early to tell. especially with her being developementally delayed, and behind in both speech and asl. she also mentioned that lilia might be hearing voices, telling her to do things. but again becuase of the lack of communication its hard to tell. either way we are hoping this works. it was a very hard choice to medicate her for this, but we need to do something she has so many issues and struggles so much.

ct results and other news....

shes doing fine right now.....but she had a ct scan the other week and it showed her left lung is in bad shape. the bottom of it is collapsed and the upper part is so full of mucus that no air is getthing through. waiting to hear back from respirtory and ent...but they are discusing on wether to do nothing sat this point...or remove the lung. its a great source of infection (she was hsopiailized in june with a bad pnemonia and she gets pnemonia all the time) also, we're not telling the kids this, but during heart transpant clinic last week we were told that lilia most likly will not qualify for a 2nd heart transplant. typically a heart lasts like 10-15 years ish... and she is almost 8 years old. our hope is that its lasts a very long time and that by the time she needs a 2nd one things will have changed and she will be a canadiate. but it was still devastating to hear. waiting on an MRI for her, and still working on geting a dx about her behavioural issues/ we know for sure its not autism...but probably adhd and maybe brain damage or other learning dissabilites or mental health issues. its a long road

July update...

Still waiting on the team to get back to us with the date for her MRI....i am very inpatiently waiting though! poor lilia has had a bit of a rough summer, the end of june she was hospitlized for a pretty bad pnemonia. lukily becuase she didnt need oxygen we were able to go home the next day on iv antibiotics and for 3 days before she lost it, a nurse came and gave those to her. then she went on oral antibiotics for 10 days,...and all was good. she had a ct scan of her lungs, and chest clinic last week. nothing big to report there yet, waiting for them to call us with results of the ct scan. chest said she was fine although she had such a bad sore throat she was always in tears. got home and took her to the ER and she had a bad case of strep throat. so more antibiotics. shes still on the meds, but at least now she is able to eat and drink again! i was worried she was going to be dehydrated. she has tranplsnt clinic august 8th as well as an echo....then nove 22 she will have her big procudure done. it was suppose to be in july but because of the pnemonia we had to rebook it.

Transplant psycologist..

so last week we went to t.o to see the transplant pyscogolist. we went over the report from her school, gave premission to talk to her teachers, etc...we told Dr.gold about how we were wondering if she had ADHD, and also about brain damage. well as it turns out lilia had some testing done at 2 weeks and up untill shortly after the transplant. they suspected that she had a grade 1 brain bleed. turns out it could never be confirmed or denied. now my sources tell me that if it was bad they never would of put her on ECMO becuase of the blood thinners...so i feel a bit better. but i do wish they would of mentioned this some time in the last 7 years. especially since were they suspect the bleed is in the language and memory part of the brain. it would explian a lot! we are hoping her cardiolgist will ok an MRI to check this and other areas. see if this should even be a concern or not. if not we will look into other things. she defeintly agree with us that despite being deaf and all the medcial stuff she went throguh she is still behind kids who have similar issues. i just want to get her help, i hate seeing her act out and struggle.

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.

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 we were in toronto all day yesterday (traffic was awful esepcially on the way there)

well the lower part is still collapsed. the uppser part has some air entry now, which is a good sign.

they have basically deicded that while she shows no symptoms..can run around fine, isn't sick, etc.. then they arent going to do anything.

most likly in the future she will lose the lung, but they are going to keep it for as long as possible.

so right now I am just gonna try and let go, and just not worry about it.

We're coming home!!

Lilia's has been off oxygen for most of the day today. she only desats down to the low 80's when doing ehr physio and bounes back up to low to mid 90's after..so thats good enough for her to come home yay! right now we are jsut waiting on an echo then we can go.

We talked to the chest specialists this morning. they want to try and see if we can bring that lung back up (it is still collpased...apparently she functions well with a collpased lung) so heavy oral antibioticsm a lot of chest pysio (4 times a day) and then when we come back for transplant clinic (on the 17th) we will do another x ray. if its not any better then we will plan the next step. Which is most likly to remove the lung.

Monday

Lilia's culture grew H infulenza, so now shes in isolation. unable to go to the playroom or for walks which sucks. But at least she got out once before they found this.

They are having issues weaning her O2. The PT has come in and is doing chest pysio and breahting exercuises in hopes to cough up as much as the mucus as possible, to clear her lungs. We will also have to start doing this at home too, even when shes not sick to try and keep her left side as clear as possible.

As soon as the O2 is off, she can go home. hope to hear from ENT about their plans asap.

Sunday update

So Lilia was extubated early this morning. Without oxygen her sats are 89/90, with they are 99/100. So it looks like she'll need O2 for a little while at least. but shes so much happier with the tube gone.

The plan is for her to be out of the CCU tomorrow and up on 4D, then hopefully go home in a couple days.

her left lung is better now that they got a lot of the muscus out of it, and shes coughing well rught now to get the rest out. Her lower part of the left lung is no good anymore, and is jsut a pool of infection so they want to remove it. However they want to do it when shes in top shape so they are looking at doing it in a few months, since she has coped pretty good without the use of that part anyways.

the stent, they arnt sure what to do about it since there isnt much they can do without risking her life. They might put a balloon in and try and make it bigger, but its risky so they are gonna think on it for a few months, and see what happens.

She should be stable enough to go home in a few days (as long as nothing else happens) the stent shouldnt move anymore, not that soon anyways...so she should be ok at home. Just soemthing will have to been done in the near future to fix this.

Saturday update

As of 3pm saturday.

So we saw Dr.Forte reccently (the doc who put the stent in so long ago) and this is his plan for now....

extubate her and let her cough up all the mucus on her own. Watch her for 3-4 days and see how she does.
If she handles extubation and if the lung gets better then we might just leave her. If she doesnt do well then we will do a rigid bronch to have a look at the stent. And then either put a balloon in to try and make the stent bigger, or cut a piece of her lung out.

So basically for the next few days its a wait and see game. Fun.

Lilia admitted to PCCU/CCCU

Summary of events

On wensday Lilia went to the hospital in London to have her G tube track dialted. Once she was asleep they had a hard time getting her to breathe and so they did an x ray after the procudure. they found that her left long was collapsed. Although she looked a lot better then her x ray showed they decided to intubate her and admit her to the PCCU (paedtric critical care unit) there they did a few bronchs (where they put a camera down the tube and suction out the gonk thats in her lungs) they found a lot of secreations. Did swabs to check for virus's.

The swabs came back negative after 24 hours. The lastbronch they did on friday showed that the stent (that she had placed in her lung as an infant) has moved and is blocking her air way. they decided to send her by helicopter to sick kids in toronto. Wehre they are more capable to handle her. Since this is where they put the stent in in the first place.


Right now the docs here at sick kids are unsure if they can even do suregery to fix the problem. They are looking at her CT scans and x rays but still seem unsure on what to do about this problem.

Lilia is getting pretty pissed off with how much they are bugging her. SDhe is on morphine though, so as long as they don't suction her shes ok.

I'll update this blog as much as possible. Since they have computers in the PICU now.

Littlest Heros Project

Lilia particpated in this the other week, for those who dont know what it is follow the link!

http://www.facebook.com/l.php?u=http%3A%2F%2Fwww.littlestheroesproject.org%2FLittlest_Heroes_Project%2FHome.html&h=1e813f5dfca41be84aa17b8f4b10c001

and our awesome photographer.. she is in windsor, totally recomend her!
http://www.angiechauvin.com

heres a sneak peek of our pictures!