It's 5 am, Friday morning. This is my 10th day at Primary Children's Hospital. I'm getting so tired of the beeping that goes on continually here. There are always machines going off. Abby just got a bloody nose, not a big deal right? Well, for Abby it could have been a big deal. I couldn't remember if the medication she's taking helps her clot more or less. I don't know, I shouldn't have to worry about my 12-year-old getting a bloody nose. Yesterday was another day of ups and downs. Medically, Abby is doing really well right now. If you just met her on the street and had a conversation with her, you wouldn't even know that she's sick; but, that's so deceiving. Because she's doing well, they told us that because of insurance reasons, they might have to send us home tomorrow. Well, not home really. We can't move into our new place until Monday. So......now what? That means that since we got here last Wednesday will have moved our stuff 6 times before we can settle into out new place. Maybe that's why I feel a little crazy. I'm so nervous to take her home. I'm not a nurse and I've done a pretty good job avoiding the nursing duties since we've been here. I don't know how to deal with giving her oxygen. All I know is that she has to have it until her transplant. I don't know what she's able to do and what she needs to watch out for. I don't know how to know when she's sick enough to take her back to the hospital, the only thing I do know is that Abby's not going to get better until she has her new heart. She's going to slowly get sicker and sicker. We need this to happen fast. I had to explain to Britt and Brock today about her condition, that was an extremely hard thing to do. She looks well, but she's not and she won't be until her transplant. I think we've all been a little fooled by how she's acting. We just need to make the most of each day.
Good things that happened today:
-Channel 2 news did a little spot on Abby. This was pretty fun for Abby. I was disappointed with what they chose to show on tv. They had interviewed Abby and she was so cute, she wasn't nervous even one bit, I would have shown Abby talking and thanking everyone for all the support. They also filmed her friends coming to her room and giving her a giant teddy bear with a t-shirt with names from the kids in the school on it. Her friends were so cute. They wore blue shirts with "Abby Epic Doman" on the front and each one of the them had one of her favorite things on the back-like ninja, or unicorn, or grapes. When they came into her room they even sang Abby a song they had made up about her, it was really cute. Why didn't they show that. I absolutely did not want to be on tv, but they told me I needed to and that it was a good chance to express my gratitude for all that has been happening, which is true, but then they didn't show that part of the story anyway. It was still fun to see her on tv.
-Abby got to walk down and play the piano again, this time she could use both hands. We just sat and listened to her put on a little concert.
-Paul Cardall is coming to meet Abby today. I think this will be really special for Abby. Maybe he'll walk her down and play a song on the piano just for her.
-My friends came to spend some more time with me and help me get a good night sleep. I loved talking to them into the night, I'm pretty sure they tuned out and told me to shut up a couple of times, but that didn't stop me, and I think I slept a little bit better. They get to stay for another night too, I love that.
-Brittany and Brock are here again. I hate it that we can't just be together all of the time, this really stinks and is going to be so hard. I try not to think about it too much, it's too depressing.
-Abby feels good. This is the greatest thing, she deserves to feel good, she shouldn't have to go through all of these things right now, no kid should.
-I left the hospital, by myself, for a few minutes today because I had to go to the bank. This might not seem like a big deal, but it is. It was my first time out of here in a week. The whole time I was gone, I just wanted to hurry back, but I did it anyway.
I'm sorry this post isn't more uplifting and positive today. It's getting harder and harder to be strong and positive, maybe it is time that we get out of here and move on to the next stage of this. I continue to see so many miracles happening with Abby, both in things that are happening now, and in things that took place previous to that day. When I look back on this last year, I see so many things that happened to me to help me to be able to handle this better now. There were so many converstions I had with different people that make sense to me now. I will share one with you. While talking to a friend not too long ago, I mentioned that I felt that somehow my family was going to make a difference to a lot of people somehow. I said that I knew it sounded really weird, but I had a feeling that my little family was going to touch the lives of a lot of people. I don't know why I had this conversation with my friend at the time, it was kind of random thing to say, but I look at what is happening now, and it just awes me. There are so many little things like this that have taken place, and some day, I will share more. I'm not ready to yet, I'm holding them pretty close to help me cope. I've also met and formed close relationships with so many people in the past year that are vital to me being able to handle this right now. Probaby a lot of you reading this know exactly what I'm talking about, you are one of the people. Things happen for a reason, of that I'm sure. I still can't think of one reason for this to have to happen to Abby and Britt and Brock and myself, but hopefully someday I will. Don't forget about us, we have a long battle to fight and our going to need your support for many days to come. If you're planning a visit, be sure to keep watching the blog so you know where we're living, or you can always text or call me, I love to hear from my friends!!
If I haven't had a chance to thank you personally for the things you've done for us, don't hold it against me, just know that we are grateful and that you made and are making a difference to the Doman's. My goal for tomorrow's blog-try to focus on the postive and dig myself out of this hole I'm in right now. It can be done, I just need to watch Abby "miracle" Doman, and I'll know what to do.
ps-thanks to Britt for loading the pics of Abby on the blog, doesn't she look great??