Day 2 went very well for Lily, although it ended up a little bit of a rough(ish) night. Children with Down Syndrome are apparently hard to sedate so she kept waking up and was obviously in pain. So the night nurse had to keep giving her extra sedation and morphine to keep her nice and quiet. The doctors were mostly happy with all of her levels throughout the night and morning, so as far as they’re concerned she’s stable – as stable as you can be with saran wrap holding your heart in your chest. Seeing her like that, with a peice of gauze over the saran wrap, with the words “open sternum” written in slightly sloppy handwriting is completely odd. Mommy can’t handle looking at it, but I am constantly lifting up the guaze and am mesmerized by how strong her heartbeat is. When I start to get anxious, I just look at it and I’m reminded why we’re doing this and what it’s worth for her.
The doctor’s looked at all of her this morning and decided that there was still too much fluid around the heart to try and close it today, so the goal was to keep her sedated so that she could rest completely and to increase the diuretic she’s taking so that this fluid can start making it’s way out of her. We’re really lucky that her surgeon is actually the surgeon on service this weekend, so we were able to see him for a moment this morning and he said that he thought she was doing well. The team will reassess during morning rounds tomorrow, and if they decide to go ahead – provided there are no emergencies to bump her – they will get started around 10am. The whole procedure takes about 3 hours (including prep and clean up) but it’s actually done bedside so that they don’t have to send her back to the OR. Keep your fingers crossed for a night full of pee!
Our nurse today was really amazing and realized that we hadn’t been shown the inner-workings of the CCCU. So, she explained when the best time was to be around each day to catch the doctor’s on their rounds, which is the perfect time to ask any questions. Before Mommy arrived, she told me about the parent showers and the washers and dryers for parents as well. She showed us the parent room in the CCCU – the fridge, microwave, and movies (for older kids!). Then, as things slowed down a little bit, she also got Lily started on the Bravery Bead program – although it was a little sad to see how many beads she got just for this surgery alone: EKG, Blood Transfusion, Surgery, Tube Insertion (it feels like there are 10 of those!) It’s an amazing program and I hadn’t realized that they literally start where they’re so small. Until she’s old enough to wear it, it’s hanging on her IV pole – and hopefully will remind the 2 mom’s just what a tough fighter this Lily is.