Haven't had a chance to really post or process the transition to rehab until now since it's been really busy getting used to the new routine, having visitors, going back and forth to my parents' to be with Isabelle and Sam...
The transition here was really hard on many levels. First, while being at Columbia wasn't a walk in the park, I had come to know the routine of the hospital, the best place to get cheap lunch, and where the closest coffee fix was. My brother came by all the time and his house was our safe zone and only a quick trip across the bridge. The focus at Columbia was helping Hannah recover from surgery and be ready for discharge. It was a little more "hands-off" as far as the intensity of help she was getting and we were on our own a lot. We left Columbia just as Hannah was finally coming out of the anesthesia and pain med haze she'd been in, and she was getting pretty tired of not being able to do anything and being stuck in bed. We billed the move to rehab as "the busy, fun place where you will have a lot going on and the place where you'll get strong." We likened it to the Rehab Gym where she goes once a week for outpatient PT, a super fun, kid-friendly place with toys, games, and cool equipment. So although the idea of not going home when we left Columbia was very hard (lots and lots of crying), she seemed okay with it and by the time to ambulance drove up to Children's Specialized, she was in good spirits, very talkative and positive and excited, back to being the Hannah I've missed seeing since before the surgery.
And then they wheeled her up to her room, and she caught sight of her bed which looked suspiciously like the hospital bed at Columbia, and then a barrage of nurses, PTs, OTs, doctors, etc. starting come in to evaluate her, meet us, fit her for a wheelchair, orient us, and on and on and after about a half hour, she and I were both hysterical. Can you say "totally overwhelmed"?! Hannah was totally crushed when she saw that same bed that she'd been stuck in for 4 days, and that took over. She completely shut down, stopped talking, cried and cried and cried. And I lost it. I thought, "Oh my God what have we done? We can't stay here. This is horrible and we're taking her home." I felt like I landed on Mars. I was disoriented, exhausted, stressed, and completed fried. Brendan pulled me aside and said to me, "Look, we just got here, this is really intense, but if in a few days, it isn't working out, we're out of here." I just needed to hear him say that, to know that we were not stuck somewhere, that ultimately we did have some control over our destiny.
I also think the stress of the past few days caught up to me. Having Hannah in surgery for 6 hours, watching her struggle with pain, nausea, and a medication haze, seeing her not be able to move at all for a few days, and then seeing her start to perk back up again after being so quiet for so long, only to clam right back up when we got to rehab-it was just too much.
We were left to our own devices a little over the weekend which was hard, because Hannah didn't get there until Thursday afternoon and we only had Friday with the primary therapists/decision makers before the more low-key weekend staff took over. We had a lot of questions and concerns about the direction they were going to take with her therapy. Over the weekend, the therapy was minimal and didn't involve much more than some trunk/core work. Meanwhile, Hannah is chomping at the bit to do more, more more: be outside, explore, move around, stand and bear weight, try taking steps, etc. She wants no part of lying down in bed even when her back is sore and she clearly needs a break, and she's quickly tiring of her room and the lack of fresh air and limits on where she can go and what she can do. We did manage to get a pass so we can take her off the hospital grounds so I took her outside for a lot of walks over the weekend-the poor kid is wilting from a lack of Vitamin D! It's amazing to me to see how many people come visit the kids on Hannah's floor and just sit around and watch TV with them or stay within the confines of the floor. First thing I asked about, "when can we get outside and how much of Hannah's therapy can be done outside?" Maybe it's a Vermont country mouse thing, who knows-we do like to be out and about as much as we can and are not a big TV family.
Anyway, so here's Hannah just itching to move and groove and it seemed like the pace of therapy was so slow we'll be here til Christmas. So B and I had a chance to pow wow yesterday, write down our concerns to be raised with the primary PT, and hopefully help steer her therapy in a more active, aggressive direction. Otherwise we may as well do all of this at home.
Well, today (Monday) Bren reports that the staff is definitely ramping things up, and that to their credit they probably just wanted to ease Hannah into the routine, wanted to give her more time to recover from surgery, and wanted to get to know her a little more first. Also, it was the weekend so the primary staff not being around, the per diem folks weren't going to make any big changes to her schedule or activities.
So today, I saw some video of Hannah using a stander-will post pics when I can-which has wheels she can use to get herself around, but which keeps her in a standing position so she is bearing weight. This is great for several reasons: first, she is bearing weight on her legs which will get them stronger. But also, it allows her independent mobility but in a position different than the wheelchair which after being in it for a long time, by the end of the day makes her back pretty sore. Also, the therapists had her doing a lot of sit-to-stand activities which activate those quad muscles and get those sleepy tired legs to do more work. They said we can put her in the stander 3x a day, so she can use it even when she's not in therapy which is great, although we have to limit it to about 45 minutes a time until she gets a little stronger. We are also eager to know what other things we can do with Hannah when she's not in therapy, but that are useful to her. Practicing her sitting balance, doing more with her core, and continuing to do some weight bearing seem to be the name of the game right now.
It is so amazing to me and such a relief that Hannah is where she is already, just one week post-op. We were told to expect a range of abilities in the first few weeks, and that it was all within the norm. But to see Hannah tolerating what she is tolerating, with such little discomfort from the surgery and with such strong motivation to work hard, is a gift. It was so scary to undertake this and worry that it might be too much for her, she was not strong enough under her tone to recover quickly, it would be a very big setback. It is a setback in that she can't yet do what she was doing before and she is not happy about it, but the speed at which she's gaining back that ground is staggering and gives me such high hopes for where we can go from here.