Day 15: She's Doing Better

Yesterday Blair slept most of the day. She didn't go pee for 14 hours yesterday even with the medication that is supposed to help with that. She's been potty trained for a while now and they've taken out the catheter, so it takes some serious convincing to get her to go in a diaper. She's done it for Spence a couple of times, but she wouldn't go for the life of her yesterday. She finally went last night and I think she felt better, but they were on the verge of putting another catheter in her if she wouldn't go. Between being told to go potty a million times yesterday and the usual things that bug her at the hospital (suctioning her tube, changing her positions, listening to her chest, and more poking and prodding) she was pretty ticked off. All day yesterday, when Blair was clearly awake and the nurse would talk to her, she would hurry and close her eyes and pretend she was sleeping. She also gave awesome glares anytime the nurse put her gloves on and Blair saw something coming. It was really pretty funny. She was so mad that her face went pretty red. It looked a little better than the total lack of color she'd been sporting for a while.

Last night she was pretty awake and a little more like herself. It was good to see her playing with her toys again and trying to move around a little more. She was playing with her baby and stuffed animals and I got out my camera and took a picture. She held up her hand to tell me to stop and then she turned all of them around so I could see their faces in the pictures. That's my girl- a little closer to normal. At home, she'd want everyone posed for sure. Blair watched three movies in a row and stayed awake for all of them which was a big accomplishment. She hasn't been that awake the whole time she's been in the hospital. She finally went to sleep around midnight last night.

This morning when the doctors came for rounds, they decided she was doing well enough that they'd try weaning her peep down to a 6 from a 9. She tolerated it pretty well and she's passed three breathing trials today. She changed so much from Monday night to tonight- she's doing a million times better. The current plan is to try to re-extubate her again tomorrow! Monday night and Tuesday morning we were planning on this happening on the weekend sometime, so tomorrow will be awesome if all goes well and she can breathe fine without the respirator. She has been on steroids since Monday afternoon to help the airway heal and get the swelling to go down, so hopefully that won't be a problem again.

They have also been decreasing her "drips" (the majorly addictive sedation drugs) and increasing the medication that will help her come off the drips easier. She's tolerated it pretty well and only had to have a few extra doses in the last day when normally she has the full strength medications and a few extra doses every couple of hours. The one downer of the last day or so is that Blair has started getting fevers again. They come down well with Tylenol and Motrin, but she's not likely getting the fevers from RSV this late in the game, so she may in fact have another bug. Another little downer, she has still thrown up a few times since the feeding tube was replaced. Poor girl.

Today Blair stayed awake from 9am until 3pm- another long stretch. She played a lot and was pretty good holding on to her toys instead of pulling at all of her tubes. It takes constant reminding, but this morning seemed a little better. This afternoon she had some intense breathing therapy and took a good long nap. Hopefully she can sleep well tonight so she's even more ready for tomorrow.

Tonight I am home with Davis for a little while and I'll head back to the hospital tomorrow morning after Grandma Erickson picks up Davis. Spence said Blair is still doing well and everything is in place to pull the ventilator again tomorrow. Wish us luck. It's a little scary to think that there is always a chance that they'll have to put it in again. Our little Blair is completely ticked off about everything attached to her and it's taken non-stop work to keep her from pulling it all off. Hopefully, we'll be down a couple of tubes by tomorrow night.

Watching a movie with her baby. Check out her right cheek- the poor thing is so sore from the tape from the first feeding tube.

Posing all of her toys for the picture.

On Wednesdays at the hospital they play Bingo. We've never gone to it, but they bring a prize to each kid in the hospital every time. Last week Blair got leg warmers and today she got a Zhu Zhu Pet. She was so determined to open that thing by herself. She made it clear that she didn't need Dad's help and she spent nearly 15 minutes working with it. Maybe she just wanted something else to pass the time...

Blair was playing with Dad this morning and doing all of the things she does for him at home- stones, peace, high fives, thumps up, and "congratulations" (they shake his hand). Doesn't she look so much better in this picture than she did yesterday? That's our little girl.

The Bingo prize finally opened.

More movies with her baby and she's sitting all the way up without a major coughing fit.

This whole thing has been such a roller coaster and we've still got a long way to go, but we're feeling better today and looking forward to our little girl being herself again.