Sorry I didn't update yesterday (Saturday). But, I took the day off. There are only two visitors allowed bedside, so Tom and Kristie went to the hospital and let me take the day off. I went for a run - five miles! And during my run in the park, I ran into one of the cardiology fellows who had rounded on Harlie Friday morning. So funny!
I also saw the turkeys again, but I didn't have my phone on me, so I couldn't take a picture.
Tom got Harlie and up and walking. He is really good at stuff like that. She still didn't like it, but she will do stuff like that for him. And he came in with fresh energy, while I am hanging on by a thread.
I met Tom and Kristie for lunch and then Tom went back to the hospital. Kristie and I went to this cool area with a lot of shops and stores and walked around.
When Tom got back to sit with Harlie she pointed to her trach and asked what it was/why it was there. Tom told her that she got very sick after her surgery and the doctors had to put it there to help her get better. She said, "No, I don't want it." And she cried. Figures. The one day I don't come to the hospital in 25 days, and she wants to have that conversation.
I think she is doing okay now. I'm sure we are going to have some ups and downs as we go home and try to get on with life.
Our friends Phaedra and Eric are in Boston bringing Phaedra's daughter back to school at Boston University. We were supposed to meet them for dinner last night. And Kristie had to fly back home.
So, Tom told me that we were meeting Phaedra and Eric at Harpoon's brewery. We shared an Uber with Kristie and it dropped us off at Harpoon's. Once there Tom told me that the hospital wanted me to have these papers. When I looked at them I was so confused. They were VIP tickets to the Sting concert that night! So the whole Phaedra and Eric dinner plans were a ruse. We were supposed to meet them, but then he got these tickets so we rescheduled for brunch today.
Tom contacted the child life specialist and asked her if she had any access tickets to Sting. She made some calls and then told him that someone donated two VIP tickets to us!! Crazy awesome!
Oh, and while we were at Harpoon's, we ran into one of Harlie's respiratory therapists, Kim. So funny! So we hung out for a bit. You know you've been in the hospital too long when you start running into people you know.
It was a really fun night. We made lots of friends and had a great time. Everyone was so nice!
Then, this morning (Sunday) on our walk to the hospital, we saw the turkeys again. This was the first time Tom saw them.
We met Phaedra and Eric for brunch, which was so, so great. They definitely brought the feeling of home with them and I felt like me again!
Then Dr. Haas came to look at her abdomen wound. And he said he is done packing it! Woohoo! So no more Ketamine and now we can go home! Can you believe it?!?!
We said our good-byes to Dr. Haas, just in case we don't see him on Tuesday. He was great and we will miss him!
But, because of logistical issues (no equipment at home, flights, etc.), we can't leave until Tuesday. So, the plan is for her to stay in the hospital until then. Pediatric Connection is going to deliver the equipment and supplies we need at home sometime Tuesday, so it is there and ready for us when we get her home.
There are two early morning flights to Boston from Richmond, and since Tuesday is the first day of school for the boys, Tom can't get them to school AND make the flight here. So, my brother Bruce, is going to fly up on the 8am flight and will help me get her home. She will be discharged and then we will all fly back on the first flight home that night, at 6:50pm.
Monday, September 4th
Okay, so I fell asleep blogging last night. Sorry about that! Tom and I went to dinner and when we got back to the hotel we packed up two suitcases so I will have less to deal with tomorrow. Bruce is going to bring me an empty suitcase for the rest of our stuff.
I tried to finish this post, but fell asleep mid-sentence. Woke up at 12:30am with all the lights and tv on.
Anyway, to finish what happened yesterday... Dr. Padwa came by and I asked her what she thought the long term surgical plan would be for Harlie.
If her jaw fuses again, which it could, it would most likely happen in about two years, give or take. If that happens, then she would have to have the same surgery she had a month ago, again.
Regardless, she will need to have something done to her jaw when she is almost done growing, around 14 years old, I think.
Of course, this plan is assuming this recent surgery didn't negatively impact her airway. And it is assuming nothing new develops.
So, I will talk to ENT and discuss whether we can decannulate (take the trach out) between surgeries. I want to talk to them about long term issues with re-traching a person multiple times. Seems like that could be a potential problem. I think it is pretty clear that she will not be able to be intubated ever again. Which is pretty unsettling if you ask me. But, its just the way it has to be.
Oh, so I called the night nurse early this morning to see how Harlie's night was. She said Harlie got up and went to the bathroom when she needed to, so that's awesome. And she said that she was talking to her and that she was sassy. She said Harlie was telling her what to do and to hurry up. Yes, she's getting to be herself again.
It is now 9:00am, and Tom just left to fly back home. I really can't wait to be home again. We left four weeks ago today. Feels like forever. Truly.
Harlie's OT just came and we discussed what our travel is going to be like to get her home. She has that terrible pressure sore at the end of her tail bone, so sitting in her wheelchair, the cars to and from the airports, the airplane, etc., is going to be challenging for her.
So, she got her up and walking, and even had her go up and down a few steps.
The OT also said she is going to come back tomorrow to help Harlie get a shower. So, that's totally awesome.
They just rounded and they are going to work on weaning her off the last three medications by tomorrow. We are really winding down this hospitalization and I am so thankful.
Thank you for all your amazing generosity of love and support. Please know you all helped us get through this!
Much love,
Christy xoxo
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