She's not coughing much and her breathing is back to her baseline. She's still on some oxygen support, but that's totally normal for her. So, everyone is happy with how she's doing so far.
I can't remember if I told you in the last post that she has already asked for water. Which is nuts. She asked to drink water yesterday - something I don't think she has ever done immediately post-op. Especially after surgery on her jaw! She tried to drink from a straw but couldn't get the suction going. So she sipped out of the cup and kept asking for more. She amazes me. She's continued to take sips today, too.
The surgeon came by this morning and took a look at her. Her orders were to clean the hardware sites. The blood is following them out of the body (they are kind of acting like a drain). So she wants that area kept clean (I'm guessing to continue to allow the blood to drain out and then stop on it's own instead of it scabbing up and then preventing the blood from coming out). Well the nurse tried, but Harlie wouldn't let her. Oh, Harlie. So, this morning Dr. Padwa told me that and then said, "So, you're going to have to do it." Great.
So, a nurse came in to help me get her all cleaned up. Harlie did put up a fight. But, with the two of us, we were able to win. And I was pretty darn proud of myself that I could clean her up so well. I think my side was cleaner than the nurse's! So when I changed her trach ties, I went around on that side and cleaned it, too. I know she feels so much better!
Harlie's IV started leaking, so they took that out, too. And I'm so thankful that they said they didn't have to start a new one. Woohoo! After we got her all clean she signed "potty." So we took her to the bathroom and she peed! So, that's really good.
Oh, and when Dr. Padwa was in this morning, she showed us how to turn the device. Here is the tool we have to use.
The tool makes it pretty easy to do. As long as Harlie doesn't thrash all about. We have to turn it three times per day. We can do it in any way we want - all three turns at the same time, or spread the turns out throughout the day. Right now it is pretty easy to turn. But she said it will get harder (meaning it will have more resistance). Ew. So, I don't see me wanting to make three turns in a row. I think we'll spread it out for now and see how that goes.
Here is a close up of the hardware.
She used her old incision scars to access her jaw, so she wouldn't make new ones. Her right side is the more abnormal side, so she had to spend more time working on that side, which left it more swollen than the left.
The pictures really don't do it justice. She looks so big and square. Well, she has a jaw now, whereas before she really didn't.
As far as what our plan is... well she is being moved out of ICU and onto the floor sometime today. Of course there was some discussion as to which floor to send her to. The cardiac floor or the surgical floor? Do I want someone who's good with the heart or someone who's good with the wounds? I'll take both, thank you.
When I was asked what I thought (very nice to ask for my opinion) I told him that it is difficult to be on the cardiac floor (or under primary cardiac care) when we are not there for cardiac reasons. I just don't feel like we fit in. They are usually dealing with far more serious situations. Plus, I need the nurses that know how to take care of her incisions. As long as the surgical nurses know when they need to call cardiology to come and look at her, I'm fine. So, that's where we're going at some point today.
Dr. Padwa said we can take her home whenever we are comfortable and ready. Our plan is to take her home and then bring her back for her follow-up appointment versus us staying in the hotel here until her next appointment. I just don't have what I need (oxygen, humidification) to feel comfortable doing that.
Tom will fly to DC tomorrow afternoon. He is riding in an ultra cycling event called the Total 200 on Saturday. Yes, he will be riding his BIKE for 200 miles. Crazy. My niece Maggie, is flying up tonight to stay and then help me get Harlie home. I think we are going to shoot for flying home on Saturday. Our goal is to get her on room air and off the supplemental oxygen. If that doesn't happen in a timely manner, then I will get the hospital to get me the portable oxygen again and will take her home on that. I just want to make sure I have whatever I need to get her home safely. Hopefully we can secure these arrangements tomorrow morning.
And then we will fly back up here next week to see Dr. Padwa again. I'm tired just thinking about it.
Okay, so we just got moved to the floor. They didn't have the room set up for her trach. So that was a scramble. Then the nurse said this was the cardiac floor. So, I said I was confused since I just had that conversation with the ICU doc earlier. So, a few minutes later an attending showed up and said, "I heard we had a problem?" Ugh. I really didn't mean to cause a problem! I was just confused since we were not in the place I was told we were going to go.
Well, the attending said she really can't go anywhere else because those areas aren't set up to monitor heart patients. Oh! Yes, I remember this being an issue before. Plus she said those nurses would see her numbers and would call a code. I think she was sort of kidding. Anyway, problem solved. We'll be here and that's fine. It's a private room with a window. And with any luck, maybe we'll get a view of the fireworks.
We just cleaned her up again. I really hope she'll get used to this stuff soon. And we (okay, Tom) turned her screws for the last time today. Tom said, "Three turns a day for 25 days - 3 turns down and only 72 to go!"
We've talked to the boys and Tom's mom a few times. They are having fun. The other night Tom was talking to Cooper and gave me the phone. I said, "Hi Cooper!" and it was as if he wasn't expecting me because he paused and then his voice got soft and he said, "Mommy, I love you." He's such an affectionate little guy.
Yesterday, Tom's mom said that Murphy was quiet all day. When she asked him if anything was wrong he said, "I'm just worried about my sister." Poor kid. It will be way better when we all get home together again.
Maggie just got here. And Harlie is sleeping soundly. And our night nurse is one that we had last time and loved. And she has a helper tonight - and they only have two patients! Awesome!
Thanks for all the love and support!