So we kind have an answer from Boston today.
Kinda sorta maybe.
Cardiologist told me in rounds that the person coordinating the response from Boston had talked with the surgeon and that the surgeon was putting together a formalized letter but that we didn't have it. He tried to give a generalization of what it said, but to be honest, I didn't understand and was frustrated so told him I'd just wait for the letter. Will talk to them again tomorrow when I'm less... flustered.
So tomorrow we should have an answer, and definitely at least some type of decision to make. Please pray for us as we make this very difficult decision, for wisdom, discernment, and a calm.
Annabelle has had an interesting week. Not too much going on. We weaned her methadone on Monday which made me nervous. We hadn't weaned in a few weeks and she's had the best few weeks she's had in a really long time! So knowing that withdrawl is coming was nerve wracking. All day monday, she did great. Tuesday, she did fabulous as well.
But Tuesday evening she started to get a little irritable, and Tuesday night she was about ready to poke someones eye out she was so ticked, and her breathing was starting to be affected. She slept some, but she was NOT pleased about her wean. They talked in Dr's rounds wednesday morning and decided to go back up on her dose and not to wean again until she gets her heart, as she'll have to be put back on a whole bunch of meds then while she recovers. And since she always has respiratory issues when we wean, and she is so precarious in that regard, they decided it was best to leave it alone.
Not that I love that I have a baby methadone addict... but I think this is best for her right now.
So anyway, she's spent yesterday and today getting over her withdrawal and getting back to normal. They did have to give her a dose of Morphine yesterday morning to help in the mean time, as she was pretty not well at the time.
Tonight though, she's better. Her and I rocked for a while, she was trying hard to ahhhh at me, and now she's in her jammies and going to sleep.
Nurse today even helped us make up a "schedule" for her during the day, which I'm really excited about trying! I'm praying this will work out and while it won't be stringent, will help us get her in a routine that she can be comfortable with too!
Mommy likes routines. I'm not always good at staying in them, but I REALLY like them!
Here's a few fun pictures from this week!
Tonight... in her pink Jammies playing with her toy before night-night time!
It's so hard being a little girl on her belly.... woe is me!
Story behind this: PT Time... and we were trying to keep her looking UP because when she looked down, she would start to fall forward. So I put the camera up and took the picture, hoping the flash would attract her attention. It didn't really work, but made for a cool picture of her sitting up in her boppy!!
In her Valentine's day outfit Grandma Johnson got her... swinging and completely conked out.
Aunt Kari and Uncle Ben came to visit! Annabelle loved snuggling:-)