Monday, August 28, 2017

Pst-Op Day 20

Today was fine. The only thing that really happened was that ENT came and upsized her trach from a 4.0 to a 4.5. Apparently the numbers on her vent were better after.

It was weird/hard to watch someone else do a trach change. I changed her trach once a week for nine years. Between our nurses at home, Tom and myself, I've probably changed more than 400 of them. She's pretty protective of herself at this point and was not cooperative at all. So, they had to give her some Ketamine. Gotta tell you, I'm ready for her to not need Ketamine anymore. It is not fun to see your kiddo like that.

Speaking of Ketamine, Dr. Haas came and changed her abdomen dressing/packing. It is impossible to coordinate doctor visits in the hospital, so they had to give her Ketamine at two separate times. I asked him how much longer she'll need these dressing changes, best guess. He said probably another week.

The plan is to attempt trach collar again tomorrow. The last time we tried it was 10 days ago. Well, it will be 11 days tomorrow. And it did not go well. But she is in a different place now. A better place, lung-wise. And she has a larger trach. So, maybe it will go better. We were going to do it today, but there was an issue with a patient next door that required a lot of doctor/nurse attention. So they didn't want to do it just in case it didn't go well.

So, we'll see how tomorrow goes. I really hope it goes well. Trying to be positive, but not get my hopes too high at the same time.  It would be really nice if she were on trach collar and ready to go home when her abdomen is done needing to be packed. I can't believe I just typed that sentence. "Really nice?" Call me naive, but I never thought she would ever have a trach again.

We are starting our 4th freaking week here. I am so ready to see the light at the end of the tunnel. When I start to think about being home again, I have to stop myself.

She got music therapy today. She liked it.


After physical therapy and music therapy, she was super tired.


Last night Tom and I went out to celebrate our anniversary. He is so good about finding ways to have fun, even when our situation isn't great.

We went to the Skywalk Observatory at the Prudential building. It is on the 50th floor.




Then we went and got a drink at Top of the Hub, on the 52nd Floor. Then we went to dinner at a place called Lolita. It was a Mexican place and it was really good. After dinner they bring a ginormous thing of cotton candy with pop rocks on top. It was fun.



He flew back home tonight. But, he did my laundry first, which was totally awesome. He really is the best. On Wednesday, his sister, Kristie, is coming to stay until Saturday.

Well, that's it for tonight. Hopefully I'll have some good news tomorrow. Thank you, as always, for all your love and support.

Much love,
Christy xoxo







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