We came home from the hospital yesterday around noon, less than 24 hours after surgery. We spent most of the afternoon on the couch, watching movies and eating snacks. She didn't seem to be in pain unless we were moving or repositioning her, and then she'd complain about her tummy or her neck hurting. She was running a bit of a fever and wasn't really interested in moving around on her own at all.
Until Logan and Claire showed up, that is. She was up and about with them, showing them her new toddler bed and playing with her toys, and we started to think she'd been milking us for all we were worth earlier in the day. But as soon as they left, she was back on the couch and uncomfortable again. I think the kids were a good distraction from the pain, and it was great to see her up and about at least for a little while.
She's been doing really well today, getting more and more back to normal as the day goes by. We started out on the couch again for most of the morning, but by lunchtime she was up and about. By naptime she was back to climbing on everything, and making me really glad we converted her crib to a toddler bed on Tuesday.
The bandage hasn't come off her head yet, so I still haven't seen exactly what the shunt looks like under there. I'm anxious to see it, but we're supposed to let the bandage fall off on its own. The swelling has increased a bit since right after surgery, but she's still nowhere near as swollen as after her other surgeries.
I gave her a bath after lunch today and was able to get a better look at how the tube comes down from her head to her abdominal cavity. You can see it come behind her ear, along the side of her neck and down her chest until just below her ribcage where it goes below the muscle and into her peritoneal cavity. It's definitely visible, especially with the bruising and redness around it. Once that goes away, you might not notice it if you didn't know it was there.
We got the final schedule for the planning appointments we'll have in Boston the week after Christmas. We'll have nine appointments over three days, which isn't too bad. Two of the days, she'll have to go under anesthesia for extensive MRI and CT scans (1.5 hours and 2 hours, respectively), but the rest of the appointments are things like anesthesia evaluations, meeting her radiologist, nursing assessments, etc. We'll also try to get over to Christopher's Haven to see where we'll be staying.
Today I booked our hotel for the trip. Hard to believe we leave in 11 days! We'll be staying at the Radisson just across the street from Boston Common. I happened to get an email from Travelzoo with a great deal at this hotel just yesterday, looked it up and found out it's only a mile from MGH, so it worked out perfectly!
We will be coming home on the 31st and plan to fly out again on January 10th, the day before starting treatment.