As most of you know by now, Rachel was discharged from the hospital on Sunday. We were sitting at the hospital Saturday afternoon, having heard no news about when she’d be discharged, watching a parade of roommates come and go after their own surgeries, and I started thinking, what exactly are the goals she needs to reach in order to be discharged? For her surgery in September, which was longer, more intense, and required 2 nights in intensive care, she had her surgery on a Wednesday and was discharged on Sunday. Her requirements then were to be able to get up and around on her own and be off IV pain meds and IV fluids. This time she was off those right from the start and was able to get up on her own pretty much right after she got her brace refitted and was cleared from bed rest (aside from one extreme dizzy spell due to low blood pressure the first time she got up after being confined to a bed for essentially 5 days straight.) I asked Rachel’s nurse the question and she attempted to page the doctors that night. The next morning she had an X-Ray of her spine to make sure everything still looked good and then she was discharged around 10am.

Rachel had gone for a couple walks down the hallway at the hospital on Saturday. Her nurse asked a physical therapist who happened to be sitting at the nurses’ station if she thought Rachel needed any PT while in the hospital. The physical therapist watched her walking and said she was already doing great and didn’t need any help from her.

Rachel’s pediatric oncologist stopped by for a quick visit Saturday afternoon. He said her MRI and CT scans from May were pretty “ugly”, as in her spine was really messed up. He asked her surgeon, “so when are you fixing her?” At Rachel’s appointment with the surgeon in late May, he seemed pretty shocked at how well she was walking and that her only problem was increased pain – so her back was apparently really messed up. The oncologist confirmed what I had been wondering since this happened – that the radiation to her spine likely caused the bones to weaken, allowing the previous screws to pull out, causing all the hardware to shift and her spine to get out of alignment. The surgeon mentioned that the fluid build-up from the cerebrospinal fluid leak that everyone had been concerned about before actually helped them during this surgery because it caused the tissue surrounding her spine to be pushed out away from the spine so they could access it easier, doing part of the work for them.

Rachel’s been craving sushi since we got to Boston…finally got some sushi takeout for lunch today (Thai food for me – we were lucky to find a restaurant to satisfy both our cravings.) The yellow roll is called the Sponge Bob roll, so we just had to try that one (coconut shrimp, cream cheese, cucumber, and mango on top for the yellow.)

*Edited to add that Rachel reports that she already feels better now than she did about a month after her September surgery and her back already feels a lot more stable than it did before this surgery. She also just had her first shower in far too long – exciting times! It’s the little things…