Tuesday, August 5, 2008

She's Wireless!!!

Well, today went pretty good, overall. We got there at 5:45am. It's not the early part that's hard, really. It's all the getting up to change over her feeds that wears me out. But, I suppose getting up at midnight, 3am and 4am is going to get a lot more common very soon, so I better get used to it.

Here's Harlie and I in pre-op. She wasn't very happy. She kept going to the door and signing "outside". I let her open the door and she looked out into the hallway and started to cry. I suppose she realized there was no "outside" out there. Just more hospital. She is definitely more aware of where she is and what's going down...



Anyway, the anesthesiologist this time asked us if she would be okay when they took her away from us to go to the OR. I said she will definitely cry. (So I took the opportunity to tell her about our experience with them kicking us out of the PICU last time and that I think it scarred her for life and that other hospitals have stopped kicking parents out - not that I think it did anything at all, but, hey, I tried!) So she suggested that they give her some Versed through her feeding tube to help her relax and not remember anything. So, we said sure. Tom couldn't stop laughing. Although it was funny to see her so happy all of a sudden (that stuff kicked in very fast) I couldn't help but feel like it was just wrong to see your 22 month old drugged.




But, it definitely helped. When the nurse took her away, she just went with flow. So, I think it was a good move. Anything to help her not be afraid.

I was worried when the surgeon came to look at her before going into the OR. The first thing he said (other than "What happened to her chin?" - which was only the 5th time we heard that question. After seeing her post-op from jaw surgery I don't even see a regular boo boo now.) was, "Wow, she's loosened her wires a bit." Huh, didn't notice. But when I looked closely, you could see that her bottom teeth were no longer on top of her top teeth. Uh oh. So, of course, my worrying gears started going.

But, after he was done, he said she looked good. Maybe her wires loosened when she hit her chin the other night. Which totally explains the bleeding from inside her mouth and why she cried for what I thought was an unusually long time. She's very tolerant of pain and doesn't seem to be bothered by much. Anyway, that would be a good thing because it just happened, so no real damage done (we hope).

He said that her jaw felt good and strong and that her teeth looked fine. Her jaw has recessed a bit, but that is to be expected (which is why they wired her bottom teeth on top of her top teeth). Unfortunately, because her jaw could still recess some, we have to give her 6 months before starting the decann process (getting the trach out). Although this was hardly surprising, we're still slightly disappointed. I'm not going to lie, I had dreams that our life would be closer to normal sooner rather than later, but it is not to be - yet.

He was able to remove the wires without having to make any more incisions, so we are very happy about that. He also said that her scars under her jaw are "unacceptable" and that they are definitely going to have to repair them when she's closer to 5. That girl's 5th year is going to be a busy one!!! Don't they realize that she will be in school then and she shouldn't miss that much time??? We've already got her scheduled for her eye repair and prosthetic ear for that year.

Anyway, she was "awake" and not very happy when we got to see her. So we held her for a while and she fell asleep. Her mouth is wide open... like she doesn't have the strength to close her jaw. I guess it's pretty safe to say that her jaw muscles are pretty weak right about now. So we got a good look inside her mouth and she has a lot of teeth! Her mouth bled for a while so she looked pretty rough for a few hours. As you can see...

I think it will take a little more time to see what she's really going to look like. Patience...

At one point the nurse did something to make her cry - and I mean REALLY cry. And, we could hear her!!! It was unbelievable! I was so happy I cried, too! It was SO wonderful!!! She continued to make "sound" throughout the day as long as she exhaled hard enough. It sounds almost like a wheeze. But, it's sound and I'll take it.

Overall, she bounced back pretty quickly and was happy to get home. All day long she kept putting her fingers (and anything else she could get her hands on) in her mouth. It is so nice to see!!! It has to feel good to her! After her bath I gave her one of those sponge swabs on a stick (the kind you get at the hospital if you can't have anything to eat or drink) to clean her mouth out of any left over blood. I was afraid she would gag - because it's pretty large for her little mouth. But, she took it and bit on it and moved it all around with no problem. So, we have high hopes that she will make some good progress orally. After those spots where the wires were heal a little, I'll start to brush her teeth again. Ahhh...

Luckily, Beth, our speech therapist will be here in the morning. I can't wait to see what she has to say.

Well, she also had the ABR test done - but I am way too tired to write anymore tonight. I'll have to tell you about that tomorrow.

Take care,
Christy

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