I am sitting at B's bedside typing this. We spent our second night in the Pediatric Cardiac Intensive Care Unit. We should be moving to a regular room today.
B's surgery went well. She was very unhappy about having that breathing tube (ventilator) down her throat. It was hard to calm her. Apparently she tolerates lots of pain medication. One nurse told me that that is a characteristic of T21 so maybe it is also one of T18...not sure but signs point to Miss B being that way. The tube came out before noon on Saturday and she was immediately a happy girl again. Then her pain meds wore off and it took a bit to get the right combo. I think she's been sleeping since around midnight.
She has started to have a feeding in her gtube. It's such a small amount (4mL per hour) at first.
I'm not sure what else the day holds for us...will try to update later.
Thank you all so much for your prayers. We have so much to be thankful for and each of you are on that list.
On another note, this place is amazing. I have lived near this hospital most of my life and not known what a blessing that is. It's like another world here...one where time on the outside stands still. I've met parents who have been here for weeks and months who sleep on cots in the waiting room every night. I also met a woman who woke up and started her day thinking it was just a normal day and after an accident had her daughter airlifted here yesterday afternoon. She literally arrived with just her purse and lives hours away. Wow is all I can say.
C
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