In pre-op we talked about surgery, the ICU, procedures, and a portion was devoted to the demeanour of kids when they leave the ICU and make it to the floor. Their description of a fairly rough day was pretty accurate. Ellie is still very stable and doing great but the move and the regular hospital procedures were not making her happy today. Several lines have been removed and Ellie is now in the step down room on the main cardiac floor. Tomorrow we should move to our own room. A small complication has arisen which we were warned about prior to surgery in which one of the thoracic ducts was injured during surgery. Such an injury can cause fluid build up in the body. There are methods that can be taken to prevent this build up while the injury heals. It can take around 6 weeks to heal or possibly longer. We can go home prior to it healing but we have to make sure things are under control first. Our first option to try is to put Ellie on a special formula which unfortunately most kids don’t like. This is a little sad for me as already since surgery Ellie’s feeding has been amazing. Bottles are so much easier I can’t even describe how happy it makes me, so to have to go back to difficult feedings is a bit of a blow. But this should be temporary and other than this bump Ellie is doing amazingly well. Bonus for today, I got to hold Ellie. Holding your baby in your arms can cure any sadness. The nurses on the floor are so impressed with her and say if it weren’t for this setback we would be going home soon (ouch). Even in her discomfort Ellie remains mostly calm, only complaining when she’s really upset. I can see hints of smiles and sweet glances, slowly becoming more like herself again. Goal for tomorrow: get off oxygen!
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