Saturday, May 21, 2011

Day 3-Teams, $$$$, and ICU, Team Doman

I know I'm still a day behind, but I'm trying to get caught up and I was smart and started taking notes to help me keep track. Thursday night was still long and I just watched the clock all night long. I'm not sure why I want it to go faster, not quite sure what I'm waiting for. I'm going to learn patience through all of this, that's for sure. I'm going to call today the "Team Day." These are the teams of doctors that I met with throughout the day: Defibrillator team, Icath team, Head cardiology team, transplant team, picu team, picu nurse team, rehab team, speech team, finance team, dieticians, pharmacy team, and when my friends came up to take care of me, I named them the Doman team! Needless to say, they take such good care of Abby here, I never have to worry that anything will be missed. Keeping it all straight has become very hard for me, too hard. I just stare at them when they're talking and nod my head every once while, I pretend like I'm really interested in what they're saying but it's hard to focus and my mind wanders. But it's interesting because later when someone asks me what they said, I can repeat a lot of it word for word, so it's getting in there somehow.
I started the day with an early phone call Ali. I just needed to talk to her, she has a way of helping make sense of some things, and I wanted her to tell me what happened on Wednesday before I saw Abby at the emergency room. I heard about 2 more miracles that happened that day. First, Ali was in the computer lab when it happened, and without anyone telling her she walked out and went straight to the gym and started doing compressions because Cammeron was needing a break. Not only that, she doesn't even remember getting there. She was in the lab, then next thing she knew she was in the gym giving Abby CPR! Thanks for being in tune saved my baby's life! The 2nd miracle was that while they were working on Abby in the gym, Mrs. Ferrell had cell phone service in the gym the whole time. Nobody ever has cell phone service in the gym, ever!!! She was able to make those critical calls that she needed to. Thanks Sandy for staying calm enough to do those things that needed to be done and for riding with Abby in the ambulance. I'm glad it was you. After talking to Ali on the phone, a much needed conversation for me, I headed back to Abby's room.
Then it was time for the day to begin. I was excited to hear what all the docs had to say when they made their rounds. One amazing things about this place is that every single one of the doctors and nurses I've met, and there have been about 75 of them, have been so nice and accomodating. They tell me everything I need to know, sometime more than once, usually more than once, they answer all of my foolish questions, and they just care so much for Abby. This is the best place she can be right now. The team told me that Abby was looking good. Her lungs hadn't gotten worse, and everything was right where it was supposed to be. It's good that she's doing so well, but because she's doing so well she's only going to be listed for her transplant at a level 2. the highest level is level 1a, then 1b, then 2. So this means we could be waiting a long time for her heart, which means I need to start deciding where and how we're going to live here. We need to be closer than 2 hours away from primary chilren's hospital. They will be giving me a pager and I'll need to het here as soon as possible when the heart comes in. This is a hard thing to think about, and I'm not quite ready to make that decision, but just know that we probably won't be back to St. George for a long time. After her transplant we'll have to stay here for 4-6 months too. This would all be so much easier if we could go home. I've had so many offers of places to stay here, the support is awesome, I just need to figure out how to do what's best for Abby, Brittany, Brock, and for the transplant. I can't come up with a place that's best for everyone! They did tell me that it has happened before that someone listed as level 2 status got a heart the very next day it was listed. I think that one thing that can you can do now is to pray for a heart, very soon, for Abby. The sooner the better. However, I do realize that for Abby to get a heart, someone else has to die. This is another really hard thing to think about. But it's going to have to happen for Abby to be okay.
In the morning we had some great visitors, it's always nice to see visitors!!! Abby's uncle Jeff and Aunt Mel, the Swayden's -friends from our school, Whitney Lee and her cute kids (loved talking to you and knowing that you'll be up here too!), Aunt Janene and Uncle Jeff, my cousin Laura, and Jon and DeeDee and the kids. Thank you everyone!!
Some very good news today is that Britt and Brock had their echocardiograms and they both looked 100% healthy! That's a relief... huge relief. I still have to get my test when I get a chance. Another cool thing is that they told us that Abby would be eligible for Make a Wish. The comment of the day came from Brock when he heard this news and said, "SWEET!!! Now we're going to be on Sportscenter and we're going to meet Lebron James!" ummm.....I think not, more like have an alpaca living at our house :) Some other good news is that Britt and Brock swear they saw Cris Angel walking around the hospital! I told them to grab him and bring him to Abby's room, but they couldn't find him again. It was also fun to watch Abby name all of her stuffed animals with her cousin Mina and Aunt DeeDee. She likes to go over these many times, since we're still dealing with short term memory issues, we go over and over the names. It was also so nice when we moved Abby our of the ICU and onto the surgery floor. There's a little less trauma going on, nicer and bigger rooms, and a few less doctors!
The most shocking moment was when I met with the finance team and found out that this entire thing could cost between 1.5 and 2 million dollars....Holy Cow! Good thing I have insurance to help with some of it. Did you know that just the heart costs $77,000? Who would have thought? And another shocker......After her transplant operation, she need to be on 16 different medications for at least 1 year: Total cost without insurance.....$7,000/month! One pill she'll have to take once a month costs $4500, for just one pill!!! Ridiculous. I can't even think about any of this either, I just have to take care of Abby right now and know that somehow it will work out. It puts me over the edge to think about it, so I just try not to right now.
My favorite part of the day were when my best friends Lesley Sparks, Jacqui Tui, and Cheryl Cozzens showed up-the Doman team! They took such good care of me. They came in and immediately Abby and I were happier. We loved reading and going through all of the things they brought up with them, it really lifted our spirits. Abby really wanted her pillow pet that's a dolphin to be a narwal, so Tui rolled some paper and taped it on. The whole rest of the night Abby would tell Tui how stupid it was! it was so great to see her laugh and joke and giggle again. Even though they took playing good cop/bad cop with me, I loved every second of it. They laid next to me when I tried to sleep to help me try to relax, rubbed my back and feet, talked and talked and talked to me, forced me to eat (this was so mean- they wouldn't show me my crt test results from school until I ate a cracker!!! so manipulating :)), tickled my sore head, let me just cry and cried with me, made me laugh again, talked me into not giving up, yelled at me and made fun of me for being a mother hen, let me just put my head down on their shoulder and close my eyes for a minute and not have to worry so much, organized all my papers (thanks Les, your organizational skills are amazing!), wrote things down for me so I wouldn't have to keep thinking about them, took notes during our blessings Abby and I had today so I'd know what was said, comforted me in every way possible, just listened to me-all through the night, and took care of me when I finally broke down. I'm so grateful they were here and spent the night and day taking care of me, I already miss them too much!
Once again, thank you everyone for the cards, notes, magazines, food baskets, games and books for Abby, more cards (my dad thinks Hallmark owes us a stipend of some kind!), cash to get us through these confusing times, blankets, balloons, but mostly thanks for your thoughts and prayers and love, we really need it right now! Remember pray that Abby will be able to get her new heart very soon so we can get back to St. George!!! Please feel free to come visit, we love it and need it!! We love you!!!


  1. I am so glad that you and Abby have had so many visitors and that you're sweet friends came and took care of you for a short time.

    Ever since this happened when I think of you and Abby a certain quote comes to mind. It is this " It's the character that's the strongest that God gives the most challenges to" and ironically it comes from one of my favorite movies "Return to Me"...about a girl who receives a heart transplant. Hang in there! You and Abby both are amazing and strong gals.

    I will pray continually in my heart that sweet Abby gets a heart very soon.

    The kids and I are going up to Bountiful for Memorial day weekend and I would LOVE to come and see you two. Text me if there is anything you need to be brought to you from StG. Love ya!

  2. you really changed my life forever i dont no u but i heard your story you are truly a .. hero