Day 12

Early this morning, they lowered Blair's peep from a 9 to an 8. She did so good. When the doctors came for rounds, they said the x-ray looked so much better and she was doing so great that they were going to try moving her down from an 8 to a 5. We were totally pumped. That is the magic number; 5 is a low as they have to go on the peep.

She's been at a 5 now for about five hours and she's doing okay. She has desaturated a few times, but she's been able to recover within a few minutes. Having her peep at a 5 allows her to cough up more of the junk in her lungs, so she's been suctioned out a number of times today. Suctioning is super uncomfortable, so she's been pretty mad about that, but the more stuff they can get out of her lungs, the better.

Her oxygen percentage has been moved up from 40 percent to 50 or 60 percent. If she can move that number back down to 30 or 40 percent, she will be able to do what they call a "spontaneous trial" tonight or in the morning. When it's time for a spontaneous trial, they leave the tube in place but they stop breathing for her. The respirator is turned to a different mode where she does all of the work, but they give her a little pressure support to compensate for having to breathe through a tube. In order to pass the trial, she has to be able to do all the work herself for a couple of hours while maintaining her high saturation levels and not breathing too fast. In addition to those things, they watch her chest to make sure her muscles aren't working like crazy to help her breathe.

If she's able to pass this spontaneous trial they will extubate her; so cross your fingers for her. She's been pretty awake for most of the day today and she's getting pretty ticked about everything she's got hooked up to her little body. We sit by her most of the time so she doesn't have to have the arm restraints on, but she's pretty sly and fast when it comes to grabbing at her tube and everything else stuck to her. She's gotten to the point where she'll push our hand away or hit at us when we are trying to stop her from grabbing something. It is easy to tell by her facial expressions that she's pretty upset about the whole thing. She also gets really frustrated and cries when she's trying to talk to us. She obviously can't talk with a tube in her mouth and it's so upsetting for her when she's trying to communicate with us.

She's spent much of the day playing with new stuffed animals, dolls, barbies, and books. The nurse gave her a pink sponge on a stick like they use to clean out Blair's mouth and told her to brush Zoe's teeth (the only stuffed animal with a mouth that opens). She loved that.

It's hard to watch our little girl go through this. She is on so much medication, but she's still super awake and responsive. The doctor told us that if any of us adults were on that much medication, they could do surgery on us. Apparently little kids metabolize the drugs so fast and get used to them so quickly that they have to keep going up on the doses. The medications will be an issue when they extubate her. It will take a while to slowly wean her off them, so she doesn't go through withdrawals.


Another small thing- Blair got to have her catheter taken out today. She's been pretty bugged by it this morning, so I think she's pretty happy to have one thing gone. The catheter has been a pain. In the beginning, it got clogged up and she had to have it taken out and get a new one put in twice... not fun.

Overall, Blair is doing so much better and we are so grateful for all of your thoughts and prayers. Hopefully we'll have our little girl home by the end of the week.