When I got to the hospital early the next morning, her nurse told me that she slept all night on trach collar (which meant NOT the vent). Ugh. I was a little miffed.
At rounds that morning (Thursday) I said that they weren't doing anything for her that I couldn't do at home. I'm not being argumentative, just stating the facts. And the more time you spend in a hospital, the more likely you are to pick up something else to battle. She was on oral antibiotics (not IV) and she was only on oxygen, with no breathing support. As you might've picked up from my last post, I don't rush her to the hospital with the first sign of sickness. I do ALL I can possibly do at home. When I feel like she needs more than I can give her, that is when I take her to the hospital. So, at that point, it had been four days since I brought her. The attending doc said he was comfortable with her work of breathing. But, he'd only met her on Monday. And on Monday, I was no longer comfortable with her work of breathing. I think I made rounds a bit uncomfortable that day, which I hate.
I really appreciate it when people tell me I'm doing a good job advocating for her. But, arguing with medical professionals about her care is NOT what I like to do. And it is hard to put my trust in a "new to us" doctor. I've just seen too many close calls with Harlie. It really is SO hard to be her mom sometimes. I don't know if I'm right or not. And I know I have PTSD and sometimes that can affect the way I think and react to situations. Sometimes that can be a positive, sometimes a negative.
Regardless, all is well and she went on CPAP late afternoon Thursday. Not that much has happened since then. We've just been hanging out waiting for her lungs to get better. She gets chest PT and breathing treatments. She definitely turned the corner, each day talking more and looking better in general. Yesterday (Monday) I was actually hopeful that maybe - with some luck - we'd get to bring her home before Thanksgiving. They were able to come down in support settings and the next step was to take her off CPAP and start trach collar trials.
Today (Tuesday) I came in and she just didn't look as good, and her numbers weren't as good. They trialed her on trach collar for two hours. They had to go up to 60% oxygen (room air is 21% and while on CPAP she was on 35%) and she had a notable increased work of breathing. Darn it. I am no longer hopeful that we can take her home before Thanksgiving.
Harlie got up and sat in her wheelchair this morning.
I asked her if she wanted the other sock on, and she said no. What is wrong with her? Who can wear just one sock?!?!?!
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Harlie's teacher and speech therapist came to visit. Today the weather was so nice, I left and went outside and ate my lunch and took some time just to be out of the hospital for a little bit. They stayed and hung out with her. They said that they both miss her. Harlie has now been out of school for two weeks! I am so thankful for these two ladies. They are so good to her!
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| Her teacher (Laura) and her speech therapist (Sharon). |
She even tried to do it while she was getting her chest PT.
This was her from the other night. Her and her sleep masks! She is such a riot.
Speaking of her being a riot - she has said some funny things... the other day she asked, "What about your job?" I said, "They know I'm here and it is fine." She was silent for a second or so, then said, "Your boss is going to fire you." Haha! I said, Patrick Carollo and Bill Jeffries of Kane Jeffries, LLP is not going to fire me.
She has been asking all of her nurses, doctors, respiratory therapists (RT) questions like - what's your favorite animal? Who is your favorite super hero? Tonight she asked her RT, "What is your favorite band?" She said, "No one you've heard of." Harlie said, "I like Taylor Swift. Have you ever heard of her?" Haha!
The other night her RT came in to tell her it was chest PT time and Harlie said, "No thank you, I'm good."
The first few days we were here, she would just grab the suction catheter out of their hands and suction herself. It is so funny to watch her interact with people and see them learn her personality. She's really so funny.
Okay, that's it for now. We will try trach collar again tomorrow and hopefully, she will do better. It is really hard to live and not know what the next few days will be like. Especially hard to plan Thanksgiving Day. The Turkey Trot is Thanksgiving morning. Tonight is the deadline to register online (you can register at packet pick up or race morning after tonight). We have 500 registrants so far! That is so amazing! Thank you to all who have registered so far! I can't miss this event! But, it would be so weird to be there without Harlie! I absolutely hate it when we can't be together as a family when we should be! We also have new shirts and we have fleece beanies. So excited for new merchandise!
Thank you so much for all your love and support. We really couldn't survive this life without it. Cooper had a rough day today at school. He called Tom when he got home and was very upset. I don't know how, but he had a balloon at school and decided to decorate it with the We Heart Harlie & Friends logo. He thought it looked a little plain, so he had all his classmates sign it. He brought it home carefully, so he could give it to Harlie. Then it popped. He was SO upset. But, I think it was just an outlet for him to be upset about Harlie being in the hospital. He worries about her a lot. He is very sensitive that way and he misses her so much. I thought time with good friends always makes things better. So, I called my friend Bethany and asked her what her kids were doing. She totally changed their plans - said an SOS from Cooper was far more important. For real. She ordered pizza for them and sent her kids up to the house. I just can't tell you how thankful I am for the people who love us.
Thank you so much!
Much love,
Christy xo
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