Post op day 3 may 24

The mornings seem to always be rough on lily.  It's when the drs do their rounds and the nurses need to do their assessments.   Lots of the drs want to check things out too, so lily gets pretty upset which is always hard to see.

This morning her external pacing wires were taken out.  These are wires that are connected to her heart and then stitched to her tummy, then hooked up to the pacemaker machine.  She hasn't needed them for a few days so that means they can go.  Her morphine will start to be weened today and Labs were sent to check her drained fluid for chylothorax.  During rounds they said it looked like chyle so she will probably start a low fat diet today.   (Labs again came back with only one out of 3 markers so still not chylothorax, but still ALOT of fluid draining from around the lungs)

We were moved out of the intermediate care room today because they are pushing pts out of the PICU I'm not really happy about this because nurse to pt ratio goes up to I think 1:4 vs 1:2.  Lily doesn't require a ton of attention, Justin or I are with her at all times so if she ever needs anything we can take care of that for her.  It breaks my heart being here and seeing other babies in here all alone almost all day! I want to go and cuddle them when they cry and let them know they're not alone.  It's really hard to see.

Some more dogs came to visit today.  Lily gets really excited to see them, but once they bring them up so she can see she usually turns her head and sticks her nose in the air haha.

  Lily got to pick another prize from the treasure chest today for taking her meds well.  All on her own she picked out a tiny stuffed dog to give to Hannah; adorable!  She was with my mom when she did this and When we came back with Hannah she was so excited to give it to her and kept saying "I got this for you Hannah" she was pretty proud of herself:)

Lily was also sent some flowers and a teddy bear from Justin's work.  I thought that was so nice of them.  Lily loved smelling the flowers over and over again.  Love to see that girl smile!

Lily has hardly eaten a thing all day, mostly just juice and water and this evening started vomiting :( hopefully she does better with food tomorrow.  They were going to start her on her new blood thinner warfarin but, she needs to be eating to be on it.  It's hard to see her like this needing all these meds and needles.  She had to take a nasty med today to help get rid of extra fluid, she spit it out the first time and so the nurse and I had to hold her down.  I braced her head and pinched her cheeks in to try and keep it in her mouth as she screamed and spit it out, it was awful I felt so bad for her.  I had talked to her for like 10 min trying to coach her to take it and she could have a yummy treat after to get rid of the taste but nothing worked:(. Poor kiddo. I really hope that's not a med we go home on.

Auntie Rachel and uncle Jesse came to visit her tonight, unfortunately instead of a nice quit visit it was full of horrible medicine attempts, multiple rounds of vomiting and crying:(. Justin and Jesse gave her a preisthood blessing which she sat still for.  overall a really rough end to the day..today emotionally drained me.  I feel like crying myself to sleep.  I hate that most of the time I have to be the one holding her down and forcing meds into her, or restraining her while they give her needles, all the while trying to show none of my feelings so I don't make it worse for her.