Day 2

This was taken yesterday late afternoon/early evening.  It's the first genuine smile we've seen since Monday morning, and it was brought about by a visit from Chia, the little Pomeranian who came by for a visit.  Chia looked like one of Hannah's stuffed animals and was just as snuggly and soft, and very chill.  She licked Hannah's hand and then settled right in next to her on the bed while Hannah petted her.  I was so happy to see a tiny glimpse of my girl and her sparkly, happy personality which has been overshadowed by a  more subdued, sedated version.  Hannah was actually doing pretty well (comfortable, alert, more chatty) for a good part of the afternoon and then had a pretty good night's sleep.

This morning after we saw the neuro team, they said Hannah didn't need to lay flat anymore so if we wanted to have her try to sit up, she could.  They said she might get a headache or be nauseaus, so we should take it slow and lay her flat again if she felt yucky.  They also indicated we could try to get her out of bed, but we said we wanted to wait until we saw the PT/OT team and learned the proper way to move her.  So we decided to see if she wanted to sit up and eat breakfast, and she ate with gusto and tolerated sitting up in bed with no problems.

But that little bit of activity pooped her out enough so that by the time the PT and OT came, she was ready for a nap.  We did manage to get her sitting up on the edge of the bed and even into a wheelchair to take a ride around the unit and check out the playroom.  She looked awful-exhausted, barely able to keep her head up, and not saying a word.  Bren and I kept asking her, "Does your belly hurt? Your back? Are you tired?" and she didn't say much at all, or if she did it was in a teeny tiny whisper.  We asked if she was sure she wanted to go to the playroom, or would she rather take a nap and then try again later.  Nope, she wanted to go and get some books.  So off we went, and we did manage to convince her to give the camera a half-hearted smile.

After all of that excitement, when we got back to the room Hannah was pretty uncomfortable.  She had a hard time falling asleep and seemed to be having some back spasms again so we gave her some more valium in the hopes that they would subside and also help her fall asleep.  Everything is by mouth now-they want to get her off anything via IV so she can leave for rehab tomorrow.  She also had the catheter removed-horray-and will have to be able to pee on her own before she will be discharged.  Hoping that after she has a good rest and some lunch, we can get up to pee and venture out again, maybe even try to bear some weight in her legs.

I think the whole experience is hitting Hannah in waves, especially as some of the immediate surgery pain subsides and she realizes the other discomforts and unpleasantries.  They took off the bandages on her incision and that was the first she knew that she even had a "boo-boo" back there, which is now the source of some itchiness and irritation.  She is also more and more aware of missing Sam and Isabelle and Luca, and wanting to be anywhere but here.

She is such an adaptable kid with a really high tolerance for pain and for making the best of a situation, so I'm hoping once we can get her a little more comfortable and moving around more, and we're settled into the rehab place, we can create a new reality for her that, while definitely not ideal, will be somewhat entertaining and interesting enough that she'll be okay.  And it's during this time, that the distraction of visitors will come in very handy.  Right now, we've been very focused on her comfort and she has been in and out of it so not able to appreciate anyone's presence other than ours, but in another few days I think she'll be psyched for a diversion.

Planning to have Isabelle and Sam come visit at the end of the week which will be great, and we'll be putting the call out for others to come by soon after if able.  We'll keep y'all posted once we get the lay of the land at Children's Specialized.

Stay tuned and thanks again for all the support. xoxo Krista Brendan and Hannah