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!!