Life as a Leach

Instead of waiting around for the phone call to tell us to come to the hospital, we decided to make lemonade and visit the zoo.   Check out the peacock with his babies! Riding the carousel  The zoo has overhead tunnels where the animals can walk.  It's so cool!  This is a lioness over our heads! It was his birthday today! Momma and baby boy gibbons (he ran with his hands up over his head and it was adorable!) The dad-to-be...his baby is going to be born in the next few weeks! The one in the forefront is named Abby!  She's easy to pick out because of the long hair on her tail. It was a really good thing that we went to the zoo.  We called every few hours to get an update and were strung along all day until 4:00.  I finally called at 4 to ask if I could feed her dinner and she said someone should have called us to say she had been bumped until tomorrow.  Ugh.  Gotta love hospital time! This evening, Abby loved playing with her RMH friends. ...

...to make the best of a situation. We watched quite a bit of Anne of Greene Gables today, and also played in the playroom with friends. Tonight while eating pizza, her loose tooth came out! She was quite concerned that the Tooth Fairy wouldn't find her here at RMH.  Luckily, I happen to have her cell number and Abby texted her to let her know where she was.  😉 Soon after, Ronald McDonald came riding through on his unicycle juggling!  That was a fun surprise! In true Abby fashion, she declared this a super good day!  I love that girl!!  She can choose joy even on the lousiest of days. (We don't know a time for surgery because she is an emergency add-on.  I will call at 8 am to find out.)

Today ended up being a lot more than we bargained for.  After getting to our hotel late last night, we took it easy this morning and got to the hospital for her 11:45 appointment.  After X-rays, we saw Dr. Cahill, who took one look at her back and was very concerned.  He had not been made aware of much of what we had been telling and sending the nurse practitioners.  There's a lot of blame that could be made, but that's not really productive right now.  At this point, I just want to make sure that doesn't happen again.  The important thing is fixing the problems from here on out. He's not sure what he will see when he gets in there.  If bacteria is covering the rod like he suspects, he may have to remove the rods until her body heals.  If that happens, she will be in the pinless halo for three months until she can have the big surgery to reinsert the rods.  Then she will be in the halo for another 3+ months after. If he can do the surgery now...

I'm not gonna lie--today was rough.  Abby is feeling rotten, and just doesn't want to do much of anything.  Her sleep is fitful and usually is full of moaning and tossing.  She doesn't want to do anything at the playroom and just cries in pain.  She's (obviously) very whiny, which I totally get....but that doesn't mean it isn't taxing!  My poor, sweet girl isn't feeling well at all, and it's got me asking what the coming years will bring.   These are supposed to be the "easy" surgeries where the kids are back to their usual selves the same afternoon of surgery.  A lot of these kids go home the same day!   But Abby is still moaning in her sleep, her oxygen levels dipping to the mid 80s and staying at the low 90s.  We are trying to hold out on oxygen, but if she needs it, she needs it.  Doing these expansions every 4-6 months until her chest wall is done growing is going to be rough if this is what each one will be like.  I've been to...