At 5am, Harlie's trach came out. Her nurse had to hit the code button. I heard her sats went down to 18. That's really, really bad. Luckily, she has the ET tube as a back up, so they were able to bag her and attach the ventilator to that until ENT could get there.
Normally, anyone could put a trach back in. But, not in this case. ENT had to use a scope to visualize where it needed to go. She said something about two tracks, and she had to visualize the correct one.
In the process of putting it back in, I guess she could tell that her airway hasn't healed enough to go into the OR on Thursday as planned. Maybe because of what happened, it re-injured or something. At any rate, they are now planning on doing a trach change bedside on Thursday and putting in a longer trach, so that it doesn't come out as easily. I'm guessing it just needs more time to heal. And if that goes according to plan, then she will go into the OR on Monday.
I think they really want to get her off the paralytic as soon as possible. So, they want to switch her to sedation on Thursday after the trach change. If she starts to twitch, or move too much, they will give her bolus doses of the paralytic as needed. That's the plan, but it could certainly change.
They are thinking about giving her blood today. They are still trying to wean her from the Epinephrine, and are hoping that a blood transfusion will help. The reason why they are trying to get her off the Epi is because it negatively affects the healing of wounds. It draws the blood to her vital organs, which limits how much her skin gets, basically.
I don't really know how to talk about how I feel about what happened today. It is weird because I actually woke up at 5am, but eventually fell back asleep. It is awful to think about what was happening at that time, and I didn't know it.
I had called her nurse last night before bed to check on her. Her nurse told me that she remembered Harlie from years ago. She also told me that she's been at Children's for over 20 years. I heard that she was pretty shaken up after what happened this morning. I feel bad for her. But I'm very thankful that her and the team did what Harlie needed them to do. And I'm pretty sure that I'm glad I wasn't there when it happened.
My social worker came to talk to me after I got to the hospital. So, that was good. I really don't understand how she keeps surviving these close calls. We have come so close to losing her at least three times in the past six months alone (that we know of).
Right as my social worker was leaving, my friends Sally and Michelle showed up. So, that was good. They kept me distracted. We walked to go get lunch with wine, so that was great. And the sun came out today, so that was awesome, too!
I love this picture Sally took of us on our way back to the hospital after lunch. When I look at it, it looks just like it is just a regular day, hanging with my friends, and nothing to do with a hospital stay.
Oh, and I got a very pleasant surprise this morning as I was leaving the RMH to go to the hospital. As I was leaving the building, I saw a woman standing in the lobby area. So, I asked her if she needed help. I noticed a gift basket on the desk and asked her if she was delivering it. She said yes, so I asked her to which room. She said she didn't know. So, I asked her the name, and she said Holton! I said, that's me! Turns out she grew up with Tom and his sisters, but She lives here in DC now. So, we talked for a few minutes and she asked me if I needed a ride. Since I wanted to hurry up and get to the hospital (they had just called me to tell me what happened) I totally took her up on her offer and had her drop me off a mile down the road in front of Starbucks. So, thank you Stacey and family! I'm so excited to dig into the basket tonight!
So, overall Harlie is the same as yesterday, I think. Her swelling might be slightly better. I think her skin color looks a little better.
We had some funny conversations with her nurses and her respiratory therapist, Bruce (who I remember from when Harlie was a baby).
Thank you Sally and Michelle for spending the day with me!
I have a feeling some of you may be worried about me. But, I'm doing okay, all things considered. It is harder than words can express to see our sweet, funny, full of life little girl like this. And we miss her so, so much. And I am definitely worried about her and how close we seem to be getting to running out of options. But, I am not going to break down. I think I can promise you that. At least not while she's in the hospital. Once we get her home, that might be a different story.
Okay, I am back at the RMH and thought I was going to make a peanut butter and jelly sandwich for dinner, but when I walked in there was a group of people who brought chicken parmesan, salad and cookie/brownies. So, I had a hot dinner, which was another pleasant surprise.
I'm now doing laundry. I still don't have hot water, but I've been using the shower downstairs and that's been fine. They offered me a different room last night, but it has two twin beds instead of one full sized bed. I figure my sleep is more important than the inconvenience of having to go downstairs to shower, so I elected to stay.
I was just about to type, "Please pray that the hospital doesn't call me," when my phone rang and it was them! Oh geez!!! They were calling to get my consent for the blood transfusion. So, just another minor heart attack for me. Its all good.
Thank you for thinking of us all. It really does help to know so many of you care about our sweet girl.
Much love,
Christy xoxo
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