Tiptoe’s surgery took place on January 8. To sum up, the surgery went smoothly, and recovery is progressing. Here are some highlights from my journal:
Jan. 8:
Here’s the problem with Tiptoe’s heart: she has two large holes between her atriums and her ventricles; the doctors have implied that these holes led to an abnormally narrow aorta, and an underdeveloped aortic valve. The Norwood procedure is generally used when the left ventricle is too tiny to work. Tiptoe’s left ventricle is normal (except for the large hole).
Since the surgical solution doesn’t exactly match the problem, but does take care of some of the symptoms, and it’s safer than trying to simply close the holes (the valve apparently is too small right now to repair), the surgeons and cardio team decided to go that route. The nurse has said that it’s possible, if the valve grows in the next couple months, that they can do an alternative surgery that will close the holes and make use of both ventricles and both atriums. This would give her heart a longer life expectancy (current estimates are between 40-70 years at current levels of technology), and would offset some of the other side effects that the Norwood procedure has.
While we’re hopeful that she’ll be a good candidate for the alternate procedure, realistically I’m not sure how much the valve will grow in the next couple months.
Like I said, surgery went very well. There were some scary moments (according to the cardio doctors; the surgeon seemed supremely unworried) when Tiptoe’s heart didn’t react well to being removed from the bypass machine.
Jan 10
Tiptoe had this little bow glued to her head in the NICU– somehow it survived surgery, and post op, and continues with her in recovery. Cute little thing– it’s a reminder to me that there’s something more to her than just heart problems, and hospital stays, and medications. I tend to want to deal with the immediate problems and not think about what has gone before, or what might come after. That bow is a sign to me of Tiptoe’s…personhood, I guess. It’s a frivolous little thing that doesn’t add to her healing– but it does add to her *identity,* which after coping with her sickness for what seems like AGES (my calendar says it’s only been three weeks…), that’s important.
Details. 🙂
So in any case, yesterday she was quite swollen. Her chin and neck seemed to merge into a kind of trunk that ran into her chest. The skin around the wound was cleaned with iodine which kind of made her look yellowish. But her forehead and scalp were vaguely purple. And her legs were white. Very colorful. Not at all aesthetically pleasing, but somehow I don’t think that’s an important consideration.
The plan for yesterday was to just let her rest from the surgery and work out the fluid that was collecting in the folds and pockets of her body. Occasionally, she’d twitch her little arms and legs, but mostly, she lay very, very still. She sucked continuously on her breathing tube, which (hopefully?) means she’ll be ready for a bottle when she comes out of the ICU. From what the nurses have said, getting the child to eat after surgery usually represents the longest period of time in the hospital.
Around 5:30 yesterday afternoon, Tiptoe opened her eyes and looked around. She didn’t seem like she was in pain at all; M and I cooed and talked to her for thirty minutes or so, until she fell back asleep. She has beautiful, dark blue eyes. Seeing her open them for that brief amount of time was worth all the waiting and the stress of waiting.
The chest tubes are out; saturation of oxygen is good; we’re just waiting for word on whether her breathing tube is removed successfully, now. They tried last night, but she couldn’t handle it. Today feels…lucky.