Friday, June 28, 2013

The hospital stay that will never end!

Monday we left Edmonton!!! Lily was taken by ambulance to the airport and flown down to Calgary while I followed with the van.  I arrived about an hour after her, but Justin was there waiting for her to arrive which was nice.  We were so happy to be leaving, as we were expecting to only be in hospital for a day or two while they did the IV teaching.

Lily saying bye bye to Judy.  Lily got lots of treats and toys from Judy during her stay!

Lily had the most decorated window! (a few things had fallen off by this point!)

Getting ready for her ambulance ride!  She wasn't pleased once they had to harness her in!

We are still here and we aren't going anywhere until wednesday evening at the earliest.  To say I'm annoyed or disappointed is a huge understatement.   The hold up is that one of Lily's pic line ports (she has 2) has stopped working and their policy is to not send kids home if one line isn't working.  They tried twice unblocking it with special medications which did not work, and they don't know if there's a clot, gummed up with meds, or just lying up against a vessel.  Normally at this point they would just send you to get a new PICC line placed and you'd be on your way but they only have 1 Dr. on staff that does them.  1!  And he's on vacation.  So we have to sit here for an entire week doing nothing! What is so annoying about all of this is they are aware and recognize and agree they can't just have one person to do this stuff... but aside from that she is getting the exact same treatment in hospital as she is getting out of hospital so any risk would be exactly the same in or out.   All they're doing for her is hooking up her medications 4 times a day.  SOOOOO LAME I just want out of here!!!! And to top it off the hospital is totally short of beds right now so here we sit wasting space doing something that could be done exactly the same at home.   I had to have a mini melt down yesterday.   And I'll probably have another every day until I get out of here.   I'm just so tired of it I'm mad.   I'm mad that I can't take care of Hannah and that she probably has no clue who I even am.  It's been almost 2 months since I've taken care of her like a full time mother.   That is 1/3 of her life!

 I know I shouldn't be feeling sorry for myself, there are a lot of other people and kids in way worse situations. But I am throwing myself a pity party for a few days until further notice haha.  I'll get out of here for a bit over the weekend to hang out with Hannah so that's good...

I never thought I'd say it but I wish we were still in Edmonton.   At least there we knew all the staff and there was an awesome play program and things for Lily to do..  The play room on our floor has been closed the last two days so we went to upstairs play room only to be told we can't play there b/c she's not from that floor.. I guess a few months ago they had some outbreak in this unit.. awesome.   So there's not much to do... we watch a lot of t.v and movies and I've brought her some crafts to do so she is plenty happy...

I jokingly asked the dr.s if I could just drive her up to edmonton to get a PICC line placed... (I was being somewhat serious) Like really... at least then we'd be out of hospital almost a week sooner.. it's like people don't care about health care cost wastage... maybe I'm just really aware because we use up so much??  And she has 6 hour windows between meds which gives lots of time to get there! I realize there's all kinds of policies and that's what prevents it but it seems silly to me.... I'm just desperate to get out of here... and plus I don't want her catching something from kids that are actually sick...    This morning she had a low grade fever. awesome.   hopefully it's nothing.. ugh I feel like I'm in jail.

Sorry this post isn't very upbeat or positive...:(  Her incision looks really good according to Plastics, they're happy with how it's healed and it's not infected.. so that's good.    And she did an awesome job this morning when I told her I had to poke her finger to check her INR.

We were able to get "unhooked" between one dose today so we could get outside and enjoy the sunshine.  We had a picnic and went to the park! It was soooooo hot out... didn't help all I had to wear was a sweater and jeans... haha

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