Wednesday evening

Well, a lot to update again, we've been busy and unable to sit at the computer! Tuesday was a momentous day, we moved out of the PICU into a room in Intermediate Care, which is quieter and we can actually make the room dark at night! We're hoping this will really help a lot with the whole delirium issue... Emma Kate has done so well recently- she is doing awesome at her physical therapy and was walking with assistance today! She is very very wobbly and weak still, but she tries to get up and wants to move around. She's getting better at throwing a ball- she was having issues getting her hands to actually release the ball previously. Her neck and back are getting so strong again, and she can sit up in bed and on a bench mostly unassisted now. She has a lot of fun with the physical therapist, they sing songs and do the hand motions with the songs, in addition to strength and stretching exercises. She's done well with her breathing so far, she still makes a lot of noise, but it seems to come and go. On occasion she will cough (we so wish she would do it more often to clear her airway) and she'll sound nearly silent for a few minutes before starting to get loud again.

Her voice is coming back little by little, very hoarse and can be hard to to understand sometimes, but some things are really coming back. She's still somewhat reluctant to answer some questions, but this morning she was doing so well and talking a lot! She was evaluated by a speech pathologist Tuesday afternoon to judge her readiness to take food/liquids by mouth, and she was concerned about all the "wet" noises in the back of her throat, which didn't really change significantly after having a taste of pudding and a couple teeny tiny sips of water, but she wanted to give her another day to see if she would get a little better.

Our biggest hurdle at the moment is sleep issues. For pretty much all day Monday and Tuesday, the poor girl did not sleep. She had maybe a handful of 45-60 minute naps through the two days, and when she is awake, she is sort of wired. It was so sad, she was literally falling asleep sitting up- even during physical therapy the other day, she just slows down what she is doing, tilts her head, closes her eyes, and sits for about 20 seconds, then it's like she's awake again and wired. When she was awake it was like she was in constant motion, "washing" her hands and fidgeting with blankets and things. Some behaviors are totally normal for her, but they are very exaggerated now. We're expecting a lot of this is due to the huge amounts of drugs she was on and is still getting to some extent. Every day seems to be a little better than the last. Today she was just to the point of exhaustion after her PT session and after about 30 minutes of cuddling with me she finally fell asleep a little after noon. She is still asleep now at 9:15pm, and has even been through a few changes between me and Daddy. She has woken up a couple of times and cries a bit, but each time she has gone back to sleep. She's actually sleeping in the bed right now which is a great thing- so far we've only gotten her to sleep on top of someone else, cuddling. We're hoping she'll sleep a long long time and get good and rested up, let her little body have a good break, then maybe we can work on the day/night stuff some in the coming days. I imagine it will take a while to get that established again. I just can't express how relieved I am that she has finally had some significant undisturbed sleep- the nurses in this hall are much more lenient with the monitoring, and it is a lot easier on her.

Unfortunately the downside of all this sleep is that it's hard to schedule treatments... the speech pathologist came by again this afternoon to reassess Emma Kate, and she was just passed out! So we missed this opportunity, but we'll try again tomorrow morning. Once she judges Emma Kate ready for it, we'll take her for a swallow study to make sure she can swallow effectively and not aspirate into her airway. I have a feeling she'll pass with flying colors once she is awake and alert enough to engage in it. So for now she's still getting fed through a tube in her intestine.

Sounds like we might get moved out to the general floor sometime tomorrow, but we know how that goes- it may get put off a day or two... it will happen when it happens! If things continue going well and we don't have any setbacks, it sounds like Emma Kate's ENT doctor is estimating we might still have another week or week and a half here before he's ready to let us go. I certainly can't wait to get back home, but I'm not at all anxious to get out of here before we're absolutely ready!

Thanks thanks thanks again to everyone for their continued support and generosity- we can not say enough how much we have appreciated it throughout this ordeal!