Post-Op Day 15

I am struggling a bit tonight.

Today her blood pressure stayed low all day. So they had to put her on Dopamine. They tried to wean her down several times throughout the day, but they couldn't. After checking a couple of things, they told me they were concerned she could have an infection. She has plenty of sources. So they had to get blood and respiratory cultures. And they put her on Vancomycin and Clindamycin while we wait for the results. 

Wound care came by to change her stoma dressing. I don't know if I mentioned that the wound care nurse is the same nurse that trained me on Harlie's trach care when Harlie was just six weeks old. She left trach care and moved to wound care. But that's just a bonus for us since Harlie's wound is her trach site. 

While they had the old dressing off, I took a look at her wound. It is a very large open hole. Where there is supposed to be tissue and skin, there just isn't. I suppose the skin just eroded. Stitching it closed isn't an option.

The wound is 1.5 cm wide, about 1.5 cm long (harder to measure that because the trach covers it) and 2 cm deep. You can see the cannula of the trach (the tube that goes into her trachea) which you are never supposed to see. It totally makes sense that the trach could come out with very little movement. 

Tomorrow at 9am, she is supposed to go into the OR for her ENT to take a good look at how things are healing. What we all want is for things to be good enough that her trach can be secure, so that they can pull the ET tube out. 

Honestly, I don't think it looks good enough for that.  It is hard to believe that her trach is secure enough that they could pull out the back up airway that has saved her life twice now. We will just have to see what he says tomorrow.

I talk to Harlie throughout each day. But, today, I just couldn't. I tried. But as I was telling her about the boys, I started to cry. This is just so hard. 

She's received some great gifts.
Thank you!

I miss her so, so much. I can't believe it has been over two weeks since I've seen her goofy smile.

And it has been exactly seven months today since she was truly well. I took this picture while we were waiting for them to take her into the OR in Boston, on August 8th.

And this one was taken two weeks before our trip to Boston.

I just miss her more than words can say. And I wish her life could be less painful and unusual. She only missed like eight days of school last year. And she hasn't been able to go to even one day this year.

Tom is coming early tomorrow morning and will stay for the weekend. Murphy had the first night of his school musical tonight. Tom and a lot of our family and friends went to support him, which is amazing. Same for Cooper, too. Some of my family went to Cooper's tonight, and will go to Murphy's tomorrow and/or Saturday night, so they can see both. Thank you!!!

Thank you, as always, for all the love you are sharing . We have received some wonderful, thoughtful gifts, cards and kind messages and I appreciate every single one. Truly.

Much love,
Christy xo