Post-Op Day 11

It is 4pm and it has been a busy day.

My sister, Sandy, got in last night. This morning, we got up and went to the hospital. We got here just as they were rounding. They said the plan was to trial her on trach collar. I said I would be more comfortable with short sprints today after what happened yesterday.

Honestly, I don't think she's any better today than yesterday. She might look a little better in her skin color, but nothing has really changed. She is still not moving her arms and fingers and she's still pretty noncommunicative. For example, they changed her and one nurse noticed that her hand was kind of stuck under her butt. The nurse had to pick her hand up and move it for her. Totally not normal for her.

My sister hung out with Harlie while I went to the gym across the street. It was practically empty, so I had a great workout, ran one mile on the treadmill, and then walked back to the hotel to shower and change. Sandy called to say that they were getting ready to put her in her wheelchair so I hurried back so I didn't miss it.

Getting her in her chair went pretty well. I took advantage of the situation and brushed her crazy hair.

She lasted about 8-10 minutes and started to drift forward. I could tell she was getting tired. I really don't want to push her too hard. So we put her back in bed.

She has been tachypneic (fast breathing) today. So, they are leaving her on a rate on the ventilator and are not going to do any trach collar trials today.

She has moments of getting really hot and sweaty. And she has spiked a fever today. They brought in a little fan that clamps on her bed rail.  They mentioned that Methadone might be down the road. We'll just have to wait and see. They did have to give her Morphine today.

She has an infection in her belly, from where they took the fat graft for her jaw. This is what it looks like.

So, they did an ultrasound to see if there was fluid. I think they might have seen something because they ordered an official ultrasound. Still hasn't gotten here.

But they removed the dermabond and are going to come back to remove the stitches in her belly button and get a swab for cultures.

We did trach care and I saw what I think looks like a patch of necrotic tissue under the trach. So, I'm pretty sure that's infected. Her nurse called ENT to come take a look. So we will see what they think.

Either way, she's back on Vancomycin and Zosyn. Of course they just pulled her arterial line today, thinking they were done with blood cultures. So, that meant they had to stick her for blood. Shortly after that was over I noticed her mouth was bleeding. Looks like her bottom teeth are the cause. I swear they are looser. I could be paranoid though. Really hoping I am. I really, really don't want her to lose those teeth.

I just tried to put those tongue depressors in her mouth, but she did not tolerate it like she did yesterday for Dr. Haas. And I just can't make her do it. I'm not sure if she's just had a harder day, or if she is being less cooperative with me vs. him or what. And it looks like she has an ulcer in her mouth next to one of her teeth. I mean, there's only so much pain I can watch her experience.

And I'm starting to lose my politeness regarding this "trach training." For the love, can't I be grandfathered in or something? NINE years is no joke. I got it. It just feels insulting. Deep breaths...

Just found out her white blood count went from 10,000 to 20,000. So, as if we needed another marker for infection.

Today has been so busy. Things literally change minute by minute. One second she looks "good" and the next she doesn't.

Hopefully tomorrow will be better.

Sandy got Harlie an awesome balloon, which really brightens her room.

It is now almost 7pm. We will wait until the night nurse gets here and finishes report, and then we will head on out to get dinner.

So, overall, she's pretty damn miserable. I feel so, so bad for her.  There was no progress today. Only setbacks. But hopefully tomorrow will be better.

As always, thank you for your love and support. Despite our current situation, I do feel so incredibly lucky to be blessed with such an amazing community full of family, friends and even people we haven't met, supporting us the whole way. Thank you!

Much love,
Christy xoxo