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!

Home again!!!

So Lilia was released this afternoon, and the other 2 kids came back this evening from the grandparents house. So me and lilia had some alone time, she had a bath and i removed about 10 bandaids from her poor little toes and fingers.

its a little sad i dont have any pics of this hospital visit, I couldnt find the camera..although i did get a few shots on my phone. But they arnt very good.

We then went for a little walk, and got caught in a sudden downpour...ugh I feel like the worst mom ever. But she didnt get too wet actually..it was mostly me, and i warmed her up quickly when we got home.

So her feeds are still ebing run slow, they take about 2 hours each instead of 1. However we are slowly weaning her back to blois feeds and she should be back to her normal feeding schdeule by monday. If all goes well then tuesday we will slwoly be switching her formula from the good start baby formula, to a toddler tube feedding subblment instead. It was time for the change..she couldnt get enough nutrients at her age from the formula anymore.

Lilia also cant walk right now, which is very sad to see. She cant stand for more then a second before falling over...I want to get PT involved to help us, becuase I dont really know how to get her back walking. I know its becuase shes weak from losing so much weight, and also from being in bed for 2 weeks...3 weeks really since she was so sick at home for that week before she was even admitted.

Anyways though she is so much happier to be at home.

Still in Hospital

So Lilia is still is hospital, almost 2 weeks now. We have started her feeds now, slowly but getting the same amount throughout the whole day. She was on TPN through the IV, which she hasn't been on in a long time. Since she was an infant.
We still dont have the type of salmonella, but at this point shes already being treated for antibitotics for 9 days i think so no matter what it turns out to be shes probably just about done the antibitoics anyways.
hopefully her gut can toelrate the food, and then hopefully she can come home. Since right now our time off is unpaid...which is very hard on us.

It turned out that i DONT have salmonella, I was in the hospital for 2 days myself and they thought I had meninigits...after a LP and a bunch of other tests it was ruled out and I was sent home. it was not a fun time though, I am starting to feel better now though.

Salmonella

Well we found out the other day lilia has salmonella. They are still waiting on the type before they treat though. Apprently some are more severe then others. Usually they dont even treat it, jsut keep the child hydrated till its gone, but becuase shes immune compermised its a bit different. She also has pnemonia, but we beleive we got it really early..she doenst even need O2..but she is on antibitocs for it.
She blew her IV yesterday, her poor little hand was so swollen. The nurses on the floor dindt see anything so they got the team from the ICU to come up and do it. She tried 3 times to get it and couldnt. So they got 3 doctors to try and still no luck...her veins are pretty much no good now since they poked her way too many times. They were going to have to put a central line in, becuase shes NPO (no food) and had to have an iv becuase of this. Whcih they would of done is ICU..howver the ICU doctor who would of done it wanted to come up and try and finally after a few tries he got a line in! So no central line..which is great.

So back to why shes NPO after we had tried to get her feeds back up to normal. Me and brant noticed that her tummy seemed bigger, and told them. they didnt really think anything of it, said it looked fine. but decided to do an x ray mostly to amuse us I think. However the X ray came back that she has a lot of gas pockets in her intestines..so much that they are worried shes going to perfierate a bowel. So they quickly stopped all food, and are venting the gas out through the G tube. However its so much that surgery is checking on her every day, they are afradi she will rupture her colon and need surgery asap.

they are taking x rays every 12 hours to make sure shes improving..and so far she is. So we are really hoping that she will improve enough and not need suregery. however she will be in hospital untill all this is better..which could be quite a while.(keep your fingers crossed that she gets better fast so she can come home soon)

Also shes lost a lot of weight...she was 27 lbs before she got sick..now only 2 weeks later shes 22 lbs.

STOP POKING MY DAUGHTER

So they are still having some isues with her elctrolites, so they had to poke her a few times. Seriosuly though we came back from brant picking me up from work and she had 4 poke marks on her hand, 1 on her arm and 2 in her feet...does she look like a fricken pin cushion?? She was pissed too...cried when she saw us. probabaly becuase we left her alone with somone who just poked her the whole time.
then that night they had to poke her again and decided to do a finger poke..had to poke twice to get enough blood (she clots fast) and then we finally got her alseep for the night left, called in to check on her only to find out they are in her room poking her again! the finger poke wasnt accurate so they wanted a vein blood sample..ugh. and she told me she had to poke a few times to get it...she has small vens that like to roll.
So brant went back to comfort her, and she went back to sleep pretty quickly.

So other then her being miserable and starting to hate nurses..shes doing ok. not much change other then they started her back on pedilyte..they want to get that gut going again. She toelrated it fine..although shes still on the anti nausesa meds, they dotn want to risk her throwing up right now beucase she needs to try and get some food into her, I am hoping that they will try her on her formula soon...she hasnt tolerated any in like 12 days..i dont even want to know where her weight is at.

Lilia admitted again...

So it seems I never updated her blog after she was released from the hospital the last time...
well she was admitted to hospital again on saturday. She was very sick for 9 days..couldnt keep anything down, very bad dierreah, just laying around with a very vacant look in her eyes. She wasnt ehrself at all, not even her sick self (where shes tired and grumpy but still smiles somtimes and plays in bed) so we took her to the ped twice during this 9 days of sickness and the ER once. They said just to keep her hydrated as much as possible with pedilyte. that we were doing fine..they did not tests though.

Finally saturday 10 days of being so sick we took her back to the ER, they finally did some blood work and started an IV. the docotr wasnt going to, but the nruse stood up for us and inisted. When the blood work came back it shwoed all ehr electrolites were severely out of wack...which we also found out caused her bowels to shut down and stop working. Which is why she was having such watery green poops. Also her sats were in the high 80's, they did a chest x ray and her x ray was clear. basically she was so dehydrated that it was affecting her breathing.

Shes on the floor now, D7-210 in case anyone wants to visit. And after being on an iv for 2 days now and some strong meds to help with the throwing up, shes doing a lot better. Shes acting like her sick self, which is better to see. they also cathed her to check for an UTI (apparently her bowels shutting down can cause UTIs which would explain why shes still throwing up, and having fevers) they also collected stools to check for C difficule and other things..

So hopefully we'll get to the bottom of this and she'll be home in a few days.

The room fairy came

at 3:30 am! So shes been in her own room all day today, which is nice! I dont really understand how a whole bunch of rooms became available at that hour, but we'll take what we can get.

So shes still on O2 and an IV, shes really grumpy but I think thats mostly because she wants to go out and play. She cant though, becuase she has RSV/pnemonia shes stuck in isolation. And driving us all crazy lol.

They did an US on her lungs to get mroe information about the fluid...hopefully tomorrow i'll find out what exactly the plan is and hopfully she'll be home soon.

RSV

So its come back that what caused this was RSV. I'm annoyed..this was the first year they said she was strong enough to not get the rsv vaccine (which doenst prevent rsv..but helps them stay well enough to stay out of hospital) and of course she gets it and ends up in hospital...I dont know what else this means, i'll update that mroe when I know. She'll be in at least couple mroe days.

i'm also very furstrated! Shes been waiting for a bed on the 7th floor for 28 hours now, and there are stilll 3 kids ahead of her waiting for a room. i am so tempted to just take her to toronto..i know she'll get a room there.

She is in a private room in the ER, however she cant leave that room (too many bugs in the main area of the ER) we cant leave her alone at night or even for more then a few mins during the day becuase they dont watch her close at all in the ER, plus we're not suppsoe to use cells and we dont even have a cot to sleep in during the night..plus vistors are much harder to have..like the other kids.

Lilia was admitted...

So since the biopsy Lilia hasnt been feeling great. Sleeping a lot, coughing a lot. They did say after the biopsy there was a lot of mucus in her lungs, ther suctioned a lot out but told us to watch out for pnemonia..well it got her.
Friday she started with fevers, her lips tunred blue and she was shaking..she slept alomost the whole day which is very unlike her. We were going to take her in then, however we thought maybe it was just the infection from the J tube and decided to wait and take her to the Clinic sat morning..she was already asleep friday and i hate waking her to spend the night in the ER..especially if she doesnt need to.
Saturday she still had fevers and sleeping, plus the coughing so I took her in. Her sats were only 86/87 (she normally sats normally 98-100) they started her on O2 and put her in a priavte room in the ER (they always do as shes immune compermised..we also never wait in the waiting room which is nice) so after chest x rays they said yes she does have pnemonia in her elft long, it is pretty bad actually. they were talking about putting her in the PICU instead of on the 7th floor. However since she was looking a lot better (less pale, and sitting up and playing) with the O2 they decided to admit her to the floor. Which is great...PICU is not a place you want to need to be..shes never been back there since she was a little baby.
Well because of staffing issues she spent the whole night in the ER..hopefully she'll have a bed upstairs this morning when there are more nurses. She didnt fall back asleep untill midnight, but brant spent the night with her (i spent the first 14 horus with her) and we'll be switching back and forth.

I'll update on here when I can.

Biopsy

So Lilia had her annual biopsy on thursday in toronto. She did really well, her sats were a little low at first afterwards but were at 95 when we left.

We spent the night before in a hotel, just me and Lilia. It was interesting she didnt want to sleep alone so I slept in the bed with her. Once she fell asleep though she kicked me out! And then slept width ways on the bed lol. She was really tired though as she didnt fall asleep till midnight, and i ahd to waker her up for the biopsy at 6 am.

We were lucky we still got there really early as they moved the biopsy up from 9:30 am to 8 am! Without telling me! Which meant we had to get her ready very quickly and she didnt get a chance to go to the GI clinic to get her J tube removed. So i asked them to remove it while she was out for her biopsy...it took a very nice cath lab receptionsist (not sure what her title is...) making a lot of phone calls to finally get it done, but alas we are without a J tube and only have the G!! Yay, which is good becuase its infected again. Hopefully after it clears up this time it'll stop getting infected as the tube is now gone.

Now keep your fingers crossed theres no rejection!!

Lilia is Home!

I am so sorry i forgot to update that she was home. I even Forgot to call my mom and tell her..oops. Things have been crazy getting ready for us to go away this weekend.

So Lilia was discharged on thursday and we got back late thursday night. She was finally allowed food by mouth thursday morning, and she had the bigges smile when she was finally allowed a freezer.

i couldnt talk them into pulling the J tube out, even though we are having issues with it getting infected but their reasoning makes sense and it'll be pulled in about 3-4 weeks. Hopefully they can do that in London so we dont have to go back to toronto for that.

Lilia was due to go back to toronto Jan 27 for her yearly holter, GFR and an echo. However since we were just haning around the hospital waiting for her feeds to slowly go up, the did them on Wed and thursday instead.

The Holter is basically a 24 hour EKG, the GFR is a test to check Kidney function as the meds transplant kids are on can damage the kidneys. Its especially important for Lilia becuase post transplant she had pretty major kidney damage, and although its been normal for 2 years now it something we have to keep an eye on. The test is a bit of a pain though having to have an IV put in (so she had one in each hand that day!) and she has to lay fairly still for 20 mins afrter they inject the radation in to take the pics..but she watched Dora the whole time and did really well. It'll be a while before we get the results back though.

So hopefully the next time we go back to toronto is for her ECHO/DSE which is March 24.

Thanks everyone for thinking of Lilia during the G tube stuff..shes doing very well and it just glad to be home! I'll post some pics when we get back from our weekend away.

G tube update on Lilia

So lilia had the suregery yesterday around 2 pm. By 4 pm we saw her in recovery. She was in some pain and quiet fussy so they gave her 2 doses of morphine. they brought her back to 4D pretty soon after. She's been in bed since then..feeling a litt off I imagine and a little bit in pain. She was NPO all day, and then around 3 am theys tarted her very slowly on clear fluids through the new G tube.
Right now she has the most tubes she has ever had..the J tube,the g tube and an NG tube lol. Hopefully she'll lose the NG tomorrow.

I cant leave Lilia for very long to get to a computer (plus the compurters suck here), Brant is in London with Aurora and heyden (him staying in the hospital with us didnt go very well so Brant is formula feeding him and I am pumping here) I miss the other kids though! :(

If anyone wants to call get a hold of brant and he has the room number..or call sick kids and they will probably give it out? maybe anyways. Its pretty boring here. Hopefully it'k\ll be ebtter when Lilia can get out of bed and play a bit.

Wish us luck!

Well tomorrow is Lilia's g tube surgery at sick kids. We are excited to be getting rid of the NG tube, and the G tube will be a great improvment over the J tube. However we are nervous for complications (as with her first J tube surgery there was some and she had to have an emergency surgery to "fix" it) They are keeping her for 3-4 days if all goes well.
I will try and update this blog when I can, but I will need to be with her most of the time.

Dear Angel

I know your probably looking down on us from up above, a child who probably should of been about 3 years old now. you could of been a little boy or girl who Lilia would of went to school with and played with. You probably would of liked cars, and dolls just like my little one does, maybe playing with your sister and kissing your brother good night too.
Your time was cut way too short, I dont ever take the joy in a persons death, espeically a baby's. I feel for your family for the day that I rejoice in is the day your parents cry the most. I hold them tight in my prayers every night..but especially this night. I wonder how they got the news that their little one was gone, I wonder how they had the courage to make the descion that they did.
Just know that you didnt die in vain, you saved my little girls life and probably many others as well. I thank your parents for deciding to give us their most prized "possesion" their baby's heart. Because of them Lilia can smile and play, kiss us goodnight and because of them I dont cry on this day. You know she hasnt had it easy and probably never will, but I feel your prescence near her and I bet your holding her hand through everything and wiping away her tears.
Every time I feel her heart beating I think of you and whisper a small prayer of thanks.
We will never forget you, you live on inside my daughter and I know she will make you proud. Untill the day I can hug you close and say thank you in "person" I hope this letter will be enough to know that we will never forget the angel who saved our lives. Rest in Peace little one.

Blood Draws

Lilia is amazing at getting blood drawn, she never cires even when they have trouble starting one.

this was from today, she has had a lot of blood taken this last month and not very many good veins.

click the link to see the video of my star patient!

http://s24.photobucket.com/albums/c41/JobeFamily/?action=view¤t=liliaspoke_0001.flv

Lilia's Story..Part 3

Lilia didnt get better after 1 week on ECMO and many attempts to wean her off. The surgeon came to me and said you have 3 options. 1. Take her off the machine and let her go 2. keep her on the machine and see what happens. 3. Get her a heart transplant.

I asked him what her chances were of getting off of ECMO on her own and surivivng if we waited. He said he didnt think she would last too much longer on ECMO and didn't think she would ever be able to get off of it without a transplant..So right away we "listed her" becuase she was so sick she would get a heart as soon as one in her size came available. We wanted to do EVERYTHING in our power to save her life.

We waited 1 week for the heart, and it was the hardest week of my entire life. Lilia had a good ecmo run, the best they have ever seen acccording the the ecmo profusionist, but her time was running out. They told us that the longest they had a baby on ECMO for and come off suucessfully was 3 weeks..Lilia was already at week 2. One day her lungs were so bad that they even took her off "the list". Dr.Dipchand said that if a heart had come in that night, she would of not been able to give it to Lilia.

I could tell that some of the nurses were losing hope, Lisa an RT who also runs ECMO, had his wrap lilia jsut so that we could actually hug her while she layed in the bed, sedated, parlaized, full of tubes wires, and an open chest..she also took pics with our camera for us. it was one of the ebst thigns somone could do for us at that point, I still love the pictures to this day.

However lukily with a special ventalitor they managed to get her lungs into better shape. And on January 12th (the day Lilia turned 1 month old) We got the news.
We were at Lilia's beside, it was about 10 pm at night when Dr.Dipchand walked in. our hearts jumped as we thought she came baring good news. However she was so casual, asked how we were doing, checked Lilia's chart. So I thought she was just at the hospital late checking on antoehr patient or whatever and decided to pop in.
Then ever so causaully she says..so we have accepted a heart for Lilia. I was in shock and didnt believe her at first..January 13th at 6 am lilia went for surgery. It was long and wasnt easy, we feared that she would come back on ECMO (prior to her there was a baby in her room who after a transplant came back on ecmo..and didn't make it) lukily she came back without that dreaded machine. Still the special vent and her chest opened, but we could live with that.

End of january, after having her chest opened for over a month they finally closed it succesfully. Now it was a waiting came to see when she could breathe on her own again.