Post-Op Day 9

So, yesterday she didn't wake up. She opened her eyes a few times, but they didn't focus on anything. At one point we were just talking to her. Then I said, "Harlie, do you want me to leave you alone?" And she nodded her head "yes."  It was pretty funny, because that's SO her. But, nothing else happened for the rest of the day.

They are weaning her off her Morphine. But since she was on a drip for more than 7 days, they are looking for withdrawal symptoms and trying to be gentle. She's been on a ton of meds. So she's being weaned from several.

A nurse came in yesterday to talk about trach training (for me to learn how to do trach stuff). I know she doesn't know us, but trust me when I say I don't need any trach training. She had it for nine years, and didn't have it for two. I could still change a trach in my sleep. But, I'll have to show her and that's fine.

The case manager came by to confirm all of our info to begin the process of insurance changes and ordering the supplies and equipment we'll need. Being trached changes the kind of Medicaid program she needs. And thinking about what we'll need to go home, and what will need to be at home, for us to take her home makes us so sad. We got rid of everything. It had been two years, and we never thought she would be trached again. It is very hard to start to think those things through, so I stop. We aren't even talking about going home yet anyway.

Tom and I got up early this morning so we could be at her bedside at 7:30am. You can't come or go between 6:30-7:30, both morning and night. That is "distraction free time" for the nurses to give report.

Anyway, when we got here, she was much more awake than yesterday. The night nurse washed her hair and braided it. I went to take a picture, and surprisingly Harlie smiled! I couldn't believe It! She is so amazing.

She's trying to communicate, but she can't talk because of the vent and her general weakness. And she can't sign yet because her hands and fingers are still really weak. She hasn't gotten control of them yet. She mouths words, but I just can't understand what she's trying to tell me. I can tell she wants water. But they said she can't drink anything yet. She has too much muscle weakness to let her swallow. So we are putting some water on a toothette and putting that in her mouth.

Tom told her she had a trach again, but we don't know if she understands. She's pretty groggy still. Tom had to leave a little after 8am. And that was hard. If we had known, he would have stayed and worked over the weekend, coming up later so he could be here during the next couple of days. But we didn't know. And when your child gets a trach in the middle of the night because she couldn't have lived without it, you can't help but want to be there. So, we made the best decisions we could at the time.

11am

She is starting to cough a lot. And she has a ton of secretions. But she is completely silent while on the vent. And I just want to suction her, but they have a whole process, so I have to be patient. I totally remember feeling this way in the past, too. It's just so hard when I want to help her, but I can't.

12pm

They just rounded. They are going to start weaning her vent more. The goal is to get her on trach collar tomorrow. I know she'll be happier then. But they want to get her on less to no Morphine first.

I asked them how much longer they think she will need to stay in the hospital (told them I will not hold them to it as I know things change) and she said 10 to 14 days would be her guess. ☹

We did trach care and changed her trach ties this afternoon. Still remember how to do it...

She's had a low grade fever today. Hopefully that won't last long.

Dr. Haas came by and worked on ways to stretch her jaw. He said that she is making him think outside the box. So typical Harlie. I told him she doesn't discriminate, she treats all her docs the same, and never plays by the rules.

So, he is trying these tongue depressors. Starting with three and will work up to five, I think. She's tolerating it right now, so I know she's still loopy. Pretty sure she's going to throw those out when she is more herself.

Some friends visited today! Our friends Dale and Patty and their son are visiting some family here and stopped in to say hello. It was so nice to see them!! They made me laugh and that's always good! Thanks Dale and Patty!!

That's pretty much it. Overall, slow progress, which is better than no progress at all. I'll certainly take it.

I'm sure tomorrow will bring more excitement as she becomes more herself.

Thank you, as always, for continuing to keep Harlie, and the rest of us, in your hearts, thoughts and prayers. We are staying strong and trudging forward, one baby step at a time. And we couldnt do it without you!

Much love,
Christy xoxo