Sad face! The beach is closed!
Yesterday Lily continued to have way too much fluid draining... and I feared we'd be back at square one going back to nothing to eat. That was the reality we were given today during rounds, I obviously wasn't surprised but almost wished they had never allowed her to try eating for the last two days because we are now back at square one as far as chylothorax treatment goes. If she hadn't eaten we'd already be 5 days into treatment which usually is 2 weeks without food.
Yesterday she came off her oxygen which is a great step. When I came in the morning (grandma gibb was with her last night) Lily told me to take off her oxygen tubes (they had tape holding it down and she wouldn't let the nurses do it) so I got the pleasure of ripping tape off her face first thing :( she cried after I did the first one, so I asked if she wanted to wait to do the other side and she said "no take if off" poor girl. Later that night she was scolding me for ripping it off and as she pointed her finger at me with an angry face she said "Don't take that off again! not nice!" haha she's hilarious. I didn't want to do it in the first place Lily!
Tonight she hardly put up a fight while getting her heparin shot (blood thinner) I was so proud of her. When she gets upset because nurses are flushing lines etc we've been doing breathing exercises to help with her O2 sats and she does them quite well and I am finding that it is really helping her to be a little calmer. Whatever works right!?
Connect the dots anyone?? You have two legs to choose from :(
When I came back to the hospital last night she was probably the happiest I've seen her yet! Very much herself!! Today she was also very happy and comfortable. While at the beach today the nurses had to come and tinker around with her IV's (they try and keep any treatment out of the beach so the kids know it's a safe place to be and play) as consolation Lily got to take the car out on loan for the night! she was so excited she got to drive it back to the room! We picked up Flynn Rider and Tinkerbell for a ride to pick out some movies.
One noteworthy update is I have tamed the beast!!!!!! Lily's hair was beyond atrocious! She had a rats nest on the back of her head that looked like steel wool. I seriously thought there was no way of untangling it! She hadn't had to hair done since the day of surgery.. I know gross, it still hasn't been washed as we can't get her wet yet. I spent what seemed like an hour with detangler spray working at getting it out while she played. It was a miracle it came out! haha I have a dry shampoo package I'm going to try doing to her it's in a shower cap thing? I don't know how she'll react to it. Hopefully in a few days after she gets her subclavian IV out and it heals over they'll let me lie her down on the counter and wash her hair out at the sink. Right now it's sponge baths/bath wipes to clean her, she doesn't seem to mind.
This does not even come close to capturing just how bad it was!
Tonight she got her IV taken out of her left hand. I am sooooo glad because it was disgusting! so much tape and arm board to keep her hand flat etc it was starting to smell. Once they took it off lily made a face and then did a little spitting face (she does that when she smells something gross) haha I couldn't help but laugh. I was happy to give that arm/hand a good wash!
Lily is getting somewhat used to some of the procedures that happen a lot around here. She even likes to help plug in some of her monitoring wires when she gets back from playing. She's practically her own nurse!! ;)
The make a wish foundation supplied dinner tonight at the Ronald McDonald house and Lily got a "magic wand" it was so cute to hear her saying Bibbity Bobbity BOO!
I really feel like I'm missing out on a lot with Hannah! I only see her a few precious hours a day and when I do I'm usually helping Lily and not paying her much attention :( So glad my mom could be here and Justin's mom too to help us out!! It would be impossible to do without them to watch Hannah! I couldn't bear to ever leave Lily alone at the hospital!
Last night in Lily's prayers she again said she was grateful for dr's but after that she said "but not for medicine" I had to laugh a little at that one.
Lily still LOVES to play Dr. She is very gentle with her patients and shows them lots of love, giving them kisses and telling them it's going to be okay.
I love that whenever I do something for her, without asking for her to say it she'll tell me thank you or I love you sooooooo much. It's adorable! Even after having unpleasant things done she'll say "thank you mom thank you I love you." She is just sooo loving even when she's going through something awful! She has the sweetest spirit.
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