A couple of important things about that first day that I forgot are:
After all of the physicians had checked Abby they took us back to a room and sat us down to tell us a little bit about what they thought was going on. He drew some pictures on the board for me and sat explaining what was wrong with her heart. I remember just thinking, I don't care what's wrong, just tell me how you're going to fix it. In my terms, this is what I think is wrong with her heart: it's very enlarged, the top part is bigger than the bottom, and the lining on one side is way too thick. Here are the medical terms from my dad: restrictive hypertrophic cardiomyopathy, it's very rare and the problem is that her heart muscle is strong but it won't relax enough to let the heart fill, there aren't any meds that can help, the main complication besides stretching the electric fiber beyond which caused an irregular heart beat, it also caused increased pressure in the blood vessels in the lungs. It was a congenital chromosomal abnormality that makes the heart get bigger, it might be familial, so Britt and Brock and I all have to be tested. Hope for the best with this.
They had to put a chest tube in because her lung had collapsed. This has been very uncomfortable for Abby.
Abby continually asked for a drink of water for about 12 hours, sometimes asking about every 30 seconds. I had to tell her no every time because she wasn't allowed to drink anything because of her surgery the next day. This was one of the worst things out of everything for me. Eventually I talked them into letting her suck on a wet washcloth and sometimes they would let us swab her mouth with a sponge thing. Abby would be kind of funny sometimes, and instead of asking for water, she sneak in a "how about milk then?" or "gatorade?" but I still had to say no. It was really sad.
It was a long, long, night. I looked at the clock about every 5-10 minutes just wanting it to end. I wanted to go to sleep so bad, but I didn't dare because I didn't know what would happen with Abby if I fell asleep, so I just stayed awake. I think Abby needed me anyway!
Abby's 2nd day:
I just realized one of the main reasons I'm doing this. It's so I can keep track of what day it is and how long we've been here. I thought we'd been here for many days, I didn't know how many but it was a lot, but it really hasn't been that long! Abby decided to fall asleep at about the time all the doctors started going on their rounds and coming in to pick and prod her. They also kicked me out of her room for an hour while they had a shift change. So I decided to go to the cafeteria and try to get some food in me. I walked in the cafeteria, took one sniff and started to throw up, maybe food wasn't such a good idea. But I did get a phone call from all of my friends from school and it was the greatest thing ever. I loved hearing all of their voices and just being able to talk to everyone was so comforting. I had been alone all night, and that was too long! I think that is one of the hardest things with this, I don't like to be here alone, I want everyone here with me! After I hung up and cried for a few minutes, I went out to the lobby and my Aunt Janene and Uncle Jeff were just coming in the door. That was so perfect! They stayed with me until we got to go back to Abby's room. I can't really remember what we were doing all morning, except I just wanted her surgery to happen so she could have a drink. We would have teams of doctors coming in, you wouldn't believe how many, and they all would talk to me like I knew what was going on, and then they would hand me a stack of papers and make me sign forms. I have no idea what I've signed so far, but I just know I have no choice; and I sure hope they don't expect me to be reading all of the papers because I shove them in a big box and promise I'll look later. I can only think of so many things and thinking of anything is hard sometimes!
At about 12:15 they came to take her for her surgeries. Abby had to have 2 different procedures done: First, they were putting her defibrillator/ pacemaker in. This is a little thing about the size of an ipod nano. It's put in her left side right by her clavicle. Because Abby is so skinny, we will be able to see it, it sticks out a little bit. This is to help her heart to start beating again if it ever stops like at school. The pacemaker regulates her heart beat and keeps it beating at a constant rate. There are two little stringy things that come out of it and are inserted into 2 different parts of her heart and will help if there are any problems. I kind of picture it like a jellyfish with it's tentacles going down into her heart. This will only be in temporarily, once she gets her new heart they can remove it, which is good because she would only be able to talk on her cell phone in her right ear, and that could be confusing :) The second procedure was a cath test. I'm not real sure about this but it was done to help them get more info on her heart. I know they had to go in through an artery in your upper thigh, but that's probably all I know. Both surgeries together were going to take about 4 hours so she'd be under anasthesia for a long time. They got her bed all ready and we all wanted to walk with her down the hall, so she had me, Britt, Brock, Gma, Gpa, my brother Jon, his wife Deedee, and her cousins Adam, Brynn, and Mina all walking down the hall with her...and it was a long walk! Primary Children's is such a cool place, there are kids paintings on the walls and and just everything is kid friendly! Abby was still a little spacey, and when we were walking down the hall she said, "Hey, are those pictures supposed to moving like that?" We all laughed a little bit, it was a stress reliever. We got her taken in, they gave me a pager and were going to let me know when the first team of doctors were done to let us know how it went. We had a couple of hours to spend, but I can't remember what we did. But we ended up going and waiting right by where she was getting her surgery done, I didn't even need to be paged because I was ready. The doctor came down and said everything went great, they had tested the device and it worked perfectly. I thought it was scary that they purposely slowed her heart rate down so that they could test it, but it was okay. Then the transplant team wanted to meet with us. This was horrible. They took us in a room and just started talking about all of the horrible things about getting a transplant. They made it sound like it was going to be awful for her whole life, and I was just thinking....Do you understand that we have no choice about this, we didn't choose this. I finally just stopped them and asked them why we had to hear all this, was it really necessary? They said that legally they had to and that actually a couple of people had turned down the transplant because of the reactions. That doesn't make sense to me at all! After about 45 minutes, the first lady left and the next lady took over. She had to tell me about all of the drugs Abby would be on after the Transplant! Like that matters now. I've been trying so hard to just go day by day and they were trying to make me think so far ahead! I just finally asked if I was going to hear all of this again later, when they said yes, I just completely tuned out. I don't think I was very nice to the lady, I just told her to hurry and get through it. I think I had hit my overload point. I especially knew I was when my family sent me to Abby's room to wait for a while and try to sleep, they left for a while. I wanted Britt and Brock to be able to go out for while and take a break. They have been so tough through all this, but they needed a break. I went up to her room and pulled the curtains closed, but it didn't matter. I immediately had people coming to talk to me about different things. The child life team, the rehab team, the pharmacist team, the transplant pharmacist team, the finance team, etc. I just don't even know who was there or what they said. I think I mostly just stared and shook my head. When everyone left, Abby was done. We went back downstairs and they told us she had done amazingly! Then we had to hear the results. I couldn't even understand what they were saying, it seemed like they'd tell us she was so sick, but then not too sick to be status 1a on the transplant list, then that because her lungs were so bad she might not even be able to have a transplant-there is nothing to be done, but she would probably be getting a transplant and listed tomorrow. We went back upstairs, Abby slept, I was just in a daze for a while. Then another great thing happened, Desirae Roden, the vice principal from my school showed up! I wasn't expecting her but it was just incredible to see her. She stayed with me for so long and just took care of me a little bit, which was so nice. I think I talked her ear off, and cried and cried, and told her things she probably didn't want to hear, but it was so comforting to have her there with me and to be able to talk to her, and she helped me remember some important things I hadn't been thinking about and helped me refocus a little. I was feeling a little bit picked on and that this just wasn't fair at all, but she helped me remember all of the things I'm so grateful for and have been blessed with. She also helped me realize all of the many people that are thinking and praying for us, this was reassuring for me. I was also feeling so guilty because I hadn't been able to keep track of all of the people I needed to write thank you notes to, it just seemed so hard and overwhelming. But Des told me it was okay, and people would understand. So please, please understand. I would love to thank and hug each one of you personally, but I just might not remember. I'm going to try, but it's hard right now. I think I closed my eyes for a while, just thinking that Abby was stable now, and that tomorrow we would know a lot more. I know we can fight this, no matter how tired we get, we can do it. Even though sometimes it seems easier to just give up right now, I won't, we will just take it day by day. Thanks everyone, we love you!