Tuesday, May 28, 2013

"Sometimes I don't like Dr's.."

Really quick update for yesterday.. she was up from 1-4 which really sucked!!! I tried to just put movies on for her so I could get back to sleep but I feel like I was crawling out of bed ever few minutes still.  needless to say I was exhausted and by the evening I could tell my patience was starting to ween.

Lily had just about every test/procedure in the book yesterday poor thing.. A really busy day of not fun activities for this little one.  blood work, IV flushes, an echo, ECG, chest x-ray.. the the usual meds, needle pokes and tubes being drained.   Luckily there was almost no drainage so those were done just twice.


We haven't been able to get an echo done on her while being unsedated in over a year! so I was really worried this would go horribly wrong! We've been practicing at home on each other and with her toys.. I suppose it made a little difference.  Judy from Child Life came in to help distract her and it helped alot!  There was still a lot of fighting but there were long moments of calm.

Lily didn't want the ECG tech touching her so I put on all the stickers and hooked up the leads.  It felt pretty natural, I've only seen a few hundred of these done ;)  I'm just glad Lily allowed me to do it, and stayed still!

Her last big test was the chest x-ray.  I had gone home for a shower/lunch and my mom was with her.  I came back within an hour and she wasn't in her room.   I had assumed she'd gone to the beach but she wasn't there either.  When they told me she went down to radiation,  I was kind of bummed that I wasn't with her.  Instead of waiting for her in her room I decided to go down and torture myself by listening to her scream out for me from outside the room.  She had already gone in and was in the process of getting into the "torture device" so I couldn't just walk in.  I went in as soon as they were finished and she was back in the stroller.  As we were walking back to the room she said "I was a little bit scared" :( I told her it's okay to be scared sometimes.  Poor kiddo.  I felt bad for my mom that she had to go in there with her.  I asked her if she'd ever seen that device and she said no, it can be a shock to see it for the first time as I think it was for my mom.

This is what the device looks like... Lily's never looked that calm in there before! That baby must be drugged!  haha

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On the bright side, since she was hooked up for an "outing" we stopped at the beach on the way back to our room for some play time!  She played with the water toys for a long while and even stood up on her own for that time.  She also decorated a gingerbread cut out paper.  I love the smile she gave it!

Also good news today the Dr's let her have ice chips! So every hour or two she could have a few spoonfuls, which she enjoyed.  Amazingly for the 3rd day of no food she again did not ask for anything to eat.  It's usually just water she asks for and when I tell her she can't she just says "oh okay mom"

Judy from Child Life also gave Lily a cute quilt! Made and donated by volunteers.  It's purple and pink Lily's favourite colours!



Before bed we skyped with Justin.  Lily wanted to play with her tea set and play food, so Daddy went up to Lily's room at home and got out her tea set and they had a long distance tea party.  Her smile told me that it was definitely the highlight of her day!  She has the best dad!



I guess that wasn't so quick after all...
Here's a few pics of Hannah.. she loves to stick out her tongue and jump!



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