What a difference a day makes. Yesterday was a day full of surprises, all good surprises too! good visitors, good doctor visits, good news, just a good day.
We'll start with the care conference or meeting with the doctors and the transplant team. They told us how well Abby is doing, even her right lung is almost better. The heart is working really well, no problems. They explained again that rejection is not as big of a deal as it sounds. It's going to happen occassionally, and we shouldn't freak out. My kids and I decided that it shouldn't be called "rejection," just...."miscommunication" or a "misunderstanding" between the heart and the body. They talked about what happens next, this is what I liked to hear. Abby will have to keep her oxygen probably for about another month, it's just to help with her pulmonary hypertension. She will pretty much be on house arrest for the next 4-6 weeks. No going to movies, stores, people's houses.....anywhere, except PCMC of course. This will be a tough time for us, we'll just be counting down the days. She just doesn't have an immune system right now, at all, that's why we have to be so careful. I asked about driving to St. George for a couple of days, but we can't do this until the 4-6 week period is up. She still could go into arrythmia and they want to keep a close eye on her. After this time is up, if she doesn't have any problems, she'll be able to do just about anything. We'll be coming up for appointments twice a week, getting biopsies, echos, xrays, and monitoring her meds. The good news is that if all goes as planned without any problems, we'll be back living in St. George and me working by November 1st, which is when my insurance lapses! I can't even believe it, this was a huge relief for me. We'll still have to travel to Salt Lake at least once a month, but that's okay...we can do that! I know I was so worried about all of her meds, but they'll taper off a little at a time. They also talked to me about the financial stuff, and how to deal with it and keep things organized. This was a huge help because I have a stack of bills about as tall as the Empire State Building. I haven't even opened most of them. Good thing we'll have lots of time to take care of this in the next month. Just to let you know how good Abby feels, her questions to them was, "How soon until I can run???" They just told her to let her incision and sternum heal up and then she can do what she feels ready to do! This whole process is mind boggling (Britt, I know you love it when I say this word!) She only got her heart 9 days ago!!! We won't be going home today, but almost certainly tomorrow. They just took her last chest tube out and they have to monitor her for 24 hours after. It's the only thing keeping her here. Britt said she's posting the video of them taking Abby's chest tube out this morning, but if I were you I wouldn't watch. I couldn't, I would have passed out for sure. Right now, the only thing that she is attached to is oxygen. I think back to 9 days ago when she was connected to all of the machines after her transplant, and now they're all gone. How can this not be a miracle? I'm just amazed every day with the things they can do medically...it's awesome. Did you know that the wires that she's had on the outside of her belly were going in through her skin and touching her heart. It was an extermal pacemaker that was put in just in case. Luckily, they didn't have to use it, and they're gone now, but pretty cool that it can be done. What a great meeting.......all good news. I'm so grateful for all of Abby's doctors and her transplant team and the nurses and everyone involved here. They always went out of their way to take perfect care of Abby, we felt very loved and will really miss many of the people here, they're our friends now. In some ways it will be hard to leave here, but it's also a huge relief.
The next really cool thing yesterday was seeing Abby's heart. We are so grateful for Dr. Kaza for setting this up for us and for Meri's friend in the lab, Lance Erickson, for bringing it to us to see. They just carried it in a little tupperware container. When they pulled it out, I was grossed out. I couldn't believe how huge it was. We compared it to Abby's fist, which is how big it was supposed to be, and it was more than double the size, it was even way bigger Brock's fist, almost both of his fists. They opened it up and showed us the inside and how thick the lining was. You can see it in the pictures. Dr. Kaza was so great, he taught us all about how the heart should function and showed us were Abby's was having such a hard time. He told us again that Abby's heart was almost worthless, it wasn't really doing anything. We are just so blessed to have gotten her heart when she did, it was so much sicker than anyone thought. Britt and Brock loved to hold it and really examine it. I held it, but didn't really want too. As long as I didn't think that this was Abby's heart, I was okay. When that thought came to mind, I felt a little queasy. I didn't breathe the whole time I was holding, which was only a second, because it was really stinky! I only had a slight urge to chuck it at the wall, but then they told me how much they can learn by looking at her heart, and I decided I wouldn't ruin it. They asked if they could keep her heart longer than most because of all of the problems, they said it was a great teaching tool. I asked if they could tell anymore about how long her heart had been sick, or if she's had it since birth and it had just gotten worse, or what exactly happened......but they couldn't. We'll never know. Abby absolutely did not want to touch it. I can understand, it's just too weird to be holding your own heart. We just kept saying how cool it was that she got to see her own heart, most people don't get to do that. It was an experience I'll never forget. This sounds weird, but for some reason after seeing the heart, I felt better about the transplant. Maybe, then I knew that she had to have a new heart, up to that point I just had to believe what everyone was telling me. It's hard to explain, but it was good for us to see it!
Paul Cardall came to spend time Abby again yesterday, it was good to see him again because he's always so inspirational. It makes Abby remember what a miracle she is and to always look to the future and be positve. Hopefully we'll maintain this relationship as well as with all of the other "heart" people we've met recently. You just form an instant connection with each other, it's awesome. Thanks to Ali, her sister and her cousin, for their visit yesterday too, it was just what we needed. We learned a lot from it too, just what the Doman family needed. Diane-thanks for lunch and buying so many T-shirts....there's nothing quite like seeing Team Doman all over Salt Lake as well as St. George. Thanks to the rest of you that have stopped by and sent things too, it helped to make this week pass by faster!
The last good thing that happened yesterday was when our social worker, Julianna, talked to me about the donor family. She can't tell me anything about them, I know a lot of you are interested in that, but she did tell me that at any time I can write them a letter and then they can choose to write back or not. I can initiate the contact, and I will. I was excited to hear this, I've been wanting to know. I will be writing the letter this week. I need to thank this family for saving Abby's life. I want to know more about them and where the heart came from, but only if it's what they want too. I think it's going to be hard to write the letter, there are some things that are hard to put into words, and I'll have to put a lot of thought into it.....but I really want and need to do this. Abby might write a letter too, or maybe we'll do it together. Hopefully today will be our last full day in the hospital for a while and tonight my last night here. Britt was awesome last night and offered to stay here with Abby and I went home and slept in a bed for the first night in 10 nights! Thanks Britt, I feel like a new person today. It's time for the next phase in our journey.