Tuesday, May 31, 2011

around the room

hey everyone! this is britt again.. here are some pictures of things we see everyday!! enjoy

hand sanitizer.. all day, every day

all the brochures in the hall so parents can read up on their child's condition. Abby is every single one of them haha

worst. oxygen. steerer. ever.

our sweet visitor... Nich Rimando!!
i'm sooo jealous!

My mom's bed for the past 2 weeks haha

the "suck" machine

fooood bucket :)


the hospital workers made this for Abby

my mom's pillow haha

the famous board

the screen we have been constatly watching

the hot man wall

oxygen yo

one of Abby's favorite signs

this is to keep the doctors away haha

her cute door :)

ninja colony!!!

cutie pie :)


Abby was on the front cover of the Spectrum in Saint George today! Here is the link if you want to check it out http://www.thespectrum.com/article/20110531/NEWS01/105310314/Girl-waits-hopes-for-a-new-heart--
Abby will probably be leaving the hospital tomorrow, keep your fingers crossed!

May 30th-a Grateful List

Not too much to say about yesterday, just kind of the same old stuff. Abby spent lots of time with her cousin Mina-thanks Mina, I know you were probably bored, but Abby loves you! We had lots of visitors again, which breaks up the days a little bit....thank you. I got to show Britt my amazing foosball skills in the kids zone, she never knew I was a mean foosball player, I bet her new goal is to be as talented as I am, lofty goal, but something to work towards Britt :) Since things are pretty stable now, I'm going to write a grateful list for today's blog. Hopefully this will help me put things back in perspective a bit.

Things I'm grateful for today:

-It's payday
-It's not raining, finally. The first nice day since we've been here. Makes everything a little better.
-I had a pretty good night sleep last night, better than most. I still feel exhausted, but I did sleep
-Britt staying here to help keep Abby busy, they are having a blast together.
-Brock has football camp today. Hopefully this will take his mind off of being here with Abby.
-Meri, my sister, for taking care of all of the financial things happening back home. This was just too much for me to think about right now.
-Whitney and DeeDee for helping me get ready to move into our new place. It's going to make moving so much easier.
-The doctors here are so knowledgeable. I know we are getting the best possible care and that they know their stuff. I never have to worry about what they're doing.
-The nurses and techs love Abby and always take perfect care of her.
-All of the people that are helping us in so many ways right now. The fundraisers are incredible, I just can't believe everything that is happening.
-Abby feels good right now, she has no pain and is happy. She is not scared of anything either, she has complete faith that everything is going to be fine.
-We can maintain our humor through this. This is important because it's who we are.
-Mama Thacker and Mama Cozz. enough said.
-That Britt and Abby are going to watch the Justin Bieber movie every day until Abby has her new heart-Okay, I'm not grateful for this at all....I just wanted to add it to the blog :)
-Our knowledge of the gospel
-All of my friends and that they knew last night that I needed to talk to them. It was almost like they called each other and set up a calling schedule. I was able to just sit and talk for about 2 hours, just what I needed.
-I didn't wake up with a broken neck today, first day in a long time
-All of you. We would be lost without your support and prayers.

*******Most important-That Abby is here with us today and that miracles do happen!

Please pray today that Abby's INR levels stays between a 2 and a 3 so we can leave the hospital tomorrow. Today is was a 2.6. I know you don't know what this is, but maybe you can pray for it anyway, so that tomorrow can be moving day!

Monday, May 30, 2011

for a laugh..

this is britt again.. watch this video.. it's so funny! make sure you watch the whole thing for tin man's dance :) http://youtu.be/tGbfs6HZDNo

May 29th-Just another day in PCMD

Well....I think it's going to be a long day! When they came to take Abby's blood at 4:09...they let us sleep in today.....I couldn't go back to sleep, and guess what??? It's snowing outside right now. So I got up and have already started laundry. Britt just came back from a walk down the hall with another amazing story. She said that she just met a lady whose daughter is here because she had a heart transplant when she was younger and is a little sick now. After talking for a few minutes, Britt found out that she is from St. George, not only that, but she also works with the physical therapists that are helping Britt. So.....from St. George, daughter with a heart transplant, physical therapist that works with Britt's pt, I think I might have to spend some time talking with this lady today! Britt stayed over with us last night to um.......help (ya, whatever!) They were still awake and goofing off at 12:30. They were hanging out with one of our favorite nurses, Jess (he wasn't even assigned to us last night), and one of our favorite techs, Mike. I guess we like the guys. While I was trying to sleep, I could hear them in the background just laughing and having fun. The nurses and techs are so good to us, always! Especially these guys. They treat us like our family is far above the rest of the families here at the hospital, and like they would rather be helping us more than any other family too, or maybe they really would! Most of the doctors and nurses leave our room with a little smile on their face, a smile mixed with a little sadness though. I know this probably sounds weird to you, but I think I will miss being here little bit. We've been here for 12 days, we know every nurse and doctor and they know us (some of them maybe a little too well, I've had lots of long, personal chats with many of them), Abby can have whatever she wants to eat whenever she wants it and I don't have to cook it, no matter what happens, there's a nurse right outside our door, it's kind of like they've all become our friends now. But, even though we're leaving now, I know we'll be back at some point....hopefully after Abby has her new heart and is recovering from the surgery!

Yesterday was a fairly stable day for Abby, other than that her pulse went up over 100 a couple of times when she wasn't doing anything strenuous. We're not sure about this, I'll talk to the docs about it when they come in to check her out this morning. Everything else was good with her, she even plopped the box of goodies down on her bed (great box of treats by the way, thanks to all of you), and just dug in! This is good because they're worried about her calorie count. It was also a big day for me, I left the hospital twice and only panicked one of those times. Thanks to Becky Allred who came to visit and offered to stay with Abby for a bit while I went and got us lunch. Becky, we loved visiting and playing games with you, thanks for being there for us today. Then, later in the day, I had to drive Brock out to Alta View hospital to meet my dad so they could leave for St. George. This probably doesn't seem like a big deal to you, but it was big for me. Up to this point, I've been too scared to leave Abby's side for anything, so this was good for me. I did keep my phone in my hand the whole time I was gone, and I did have to call Ali to settle me down a little after I dropped off Brock, but for the most part, I did okay. Wow, how my life has changed in 10 days, sometimes it seems like I'm a totally different person. I used to be the happiest, most easy-going person I know. I loved to goof off and make people laugh whenever I could. I'm the one that would put chocolate on my teeth in the middle of our faculty meetings and then put a huge, disgusting grin on my face and then try to catch my friends eyes and make them laugh without Sandy, the principal knowing. I'm the one that started a long conversation at the drive-thru window at Dairy Queen, because I wanted to know the different between cheesecake and cheesequake ( I love to embarrass my kids), I'm the one that spent one whole night talking to my kids and singing a song I made up like I had a speech impediment and couldn't say my R's. I sounded a little like a Wonder Pet! I hope that sometime soon I can get back to being this person, it's way more fun than always being on the verge of tears and thinking so heavily about everything. This is too tiring for me!

Brock is back in St. George this week, and already having a hard time. He wants to be there to play football and spend time with his friends, but he knows he should be here with Abby and us. What a hard thing to have to go through, and I admire my kids for the strenght they've shown the past 10 days. They are amazing and are handling all of this in such a mature way. Their whole world has been turned upside down, but they're handling it with total grace and confidence, I love them for that. Please help Brock while he's in St. George, if you see him just give him a big hug and let him know that it's okay for him to be there right now, and when you're praying for Abby, remember Britt and Brock too, this is hard for them and they need the help almost as much as Abby. In a couple of hours we should find out if we're going to be able to leave tomorrow or not. I have mixed feelings about it, but at least we'll have some kind of a plan for the first time in a long time. I just have to have faith that whatever happens is what's supposed to happen, there is a purpose for everything, it's just not always manifested to us when we want it to be.

***Well, we just found out that because now her INR level is now too low, we will be staying here for at least a couple of days. I'm not sure if I should be happy or sad right now!

Sunday, May 29, 2011

May 28th-Uno Schmuno

I woke up today thinking, "I really don't want to do this again today!" The days are getting so repetitive, it just seems like the same thing over and over again. At least we have different visitors each day, that does make it better.....but the routine is the same. Today is kind of depressing though. Brock will be heading back to St. George tonight for football camp, remember to take care of him for me......he needs people to be around him keeping his spirits up and reassuring him that things will be okay. My dad will be heading back with him too. My friends left yesterday, this was hard for me, I need them here, but I know they can't stay. I just have to be grateful for the time when they are here, but I wish I knew we had a time scheduled when they're coming back....that would make me feel better. They woke Abby up at 4:30 to take blood again today, the first time the IV tech stuck a needle in her arm, she missed the vein, but spent lots of time wiggling it around trying to find it. Then she just pulled it out and said, "okay, let's try the other arm now!" Abby gave her the other arm and then just looked at me like why is this happening to me?? It broke my heart. I just wish it was a normal Sunday, and we were HOME, together, getting ready to go to church and thinking of trivial things like what we should have for breakfast. Instead, I'll pick something from the hospitality cart, and then I probably won't eat it anyway! Like I said, Kind of repetitive. Maybe we'll be able to to the church services they have here in the hospital. You would all be jealous, it only lasts 30 minutes! I heard there are only 2 speakers and they each speak for only 10 minutes, now that's church :) Plus, you don't have to dress up, sweats and slippers are even appropriate, I know you're jealous. I also know we have a lot of people coming to see us today, Abby loves the conversation, especially when people realize that she's okay and they can just be normal with her. It's fun to see how excited she gets when people come in the door that aren't doctors and nurses!

Yesterday was a funny day. Ali and Cozzens made us all laugh so hard, it was awesome. We played a game that we called "Uno Shmuno," I'm not sure where the name came from, you might have to ask Britt and Brock about that! It's very similar to Uno, in fact, exactly the same, but....you say Uno Shmuno instead of just Uno. But we played with a little twist today, the loser had to do something embarrassing, that the group chose. We all laughed so hard we were crying, it felt good to laugh.....after I realized it was okay to be laughing anyway. This is how the game went:

Round 1-Brock lost and had to go to the cafe and buy drinks for all, using his own $....well he used a gift card that was given to us, kind of a cheater! I'm glad Abby didn't lose this round!
Round 2-Ali had to ask the first guy she saw in the hall for his phone #. It turned out to be a doctor named Richard. We were down the hall just giggling.....you should have seen how red her face was! Hilarious!
Round 3-Cozzens had to sing and dance to a Justin Bieber song out in the hall. It was awesome. I think she really wanted to lose this round just to have the chance to do this! You should have seen the people poking their heads out of their doors to see, and then when they saw her later in the day, they would start laughing! She was really getting into it, this was a new side of Cozzens that I haven't seen before!
Round 4-Brock.....again. Uno is not his best game! Brock had to go and talk to this life-size Spider man down in the lobby. He then had to introduce 5 people to spider man and ask the people if they wanted to talk to him for a few minutes. We just laughed! It was especially funny when a hispanic family walked by and Brock tried to use some of his amazing Spanish he's been learning in school.....they didn't know what to think, probably because they didn't know what he was saying! HA! Next time you see Brock, ask him how Spidey's doin!
Round 5-Little Cozzens had to to do a cheerleader cheer out in the hall. I taught her the, "you move to the left, you move to the right, you peel a banana, and (grunt) you take a bite...go gorilla go, go gorilla go!" cheer. It was awesome, if she only knew her left from right......Good thing that wasn't something I was supposed to teach her in math this year!

Anyway, if felt good to just laugh. We're used to doing goofy things like this, it's our normal. It also gave Brock and Britt a chance to bond with Ali and Cozz which made me feel better about sending them to St. George without me, I know that they will help them and will be a big part of their lives now. This makes me more content.

Medically speaking, Abby is still doing great, other than her sick heart. Not any changes right now, which is good. We're still just trying to regulate her Coumadin levels before she gets to leave. They give her the medicine one day, then test her levels the next, then see if she's still stable the next. If not, we try a different dose. This is why we're still in the hospital, they're having a hard time getting it stable. She feels no pain now, but she gets a little tired and needs to rest a lot. We go on walks around the hospital, and she does okay, but gets a little out of breath. The doctors and nurses all love her, they come back and visit her after their shifts when they aren't in our hall. It's hard not to love this little, tough, kid with an amazing attitude and big heart (I know, that's not funny....but it kind of is!!) If everything continues as it is now, we will be leaving on Tuesday. I'm going to try to have everything moved in on Monday so that Tuesday I can just focus on what the doctors need to tell me before we are discharged. I'm sure we'll have lots of instructions. I also just need to get Abby ready, she might be as nervous as I am to leave. Big thanks to Whitney and Deedee, they went to our new house to see what we needed to make it more like home, and offered to stock the cupboards and just get it ready for us. That was a great thing to do since I have to stay close to Abby and won't be able to go there before we leave. Also thanks Deedee for staying with us last night, I sleep better when I have someone else here helping to watch out for Abby.

The place we'll be staying is about 10 minutes from the hospital. It's a 2-bedroom duplex with a nice family room and cute kitchen and great backyard. The people living on the other side are just sweet. It's a doctor that works with my dad and his cute wife. She's already called the relief society and let them know we are coming. Jon and DeeDee, my brother and his wife, life only about 5 minutes away. I think I'm excited to leave and get there, but nervous too. It will be easier when we have visitors, much more comfortable! I'm going to try to stock it with things to keep us busy....games, movies, xbox, books, magazines, journals, activities, etc. Abby can't be very active, so we're going to just have to do mellow things, this will be hard for us! We're usually a little hyper! If you still feel like you want to help us in some way, this would be a small way to help, I'm worried about getting a little bored. I'm worried about finances too. I'll be paying for two households, but I just have to believe that things will work out somehow. The thing I keep trying to think about and I've probably said this in the blog before is that, Yes, we are very unlucky that this is happening to us, it's really crappy, but.....we're also pretty lucky that it's happening to us. We can do this, we have so much support. We are the perfect people for this to happen to, because of who we are. Plus all of the little tender mercies that have been happening in the past few weeks, we can't forget about those. I can honestly say that little miracles happen every day! Keep thinking about little Abby and that heart that I know she'll be getting soon!!! We are grateful for you.


Saturday, May 28, 2011

more pictures

May 27th-Paul Cardall's visit and a much needed massage

I know I'm a little slow with the blog this morning, but I have a good reason.......I finally slept last night, for a long time too!!!! It's amazing how much better I'm doing now that I've had my good friends here for a couple of nights taking care of me. Ali and Cozz, I love you. Last night they had Ali's cousin come to the hospital right before I was going to bed and she rubbed my neck and my shoulders and my hands and my feet, and it just completely relaxed me for the night. She said she couldn't believe the tension that I was carrying in my neck and shoulders, I couldn't believe it either once I relaxed a little bit. I don't think I've taken a deep breath in the past 10 days! I woke up today feeling a little more rested, still tired, but better. Now if we can work on the food. I'm having a hard time because when I eat, even if it's just a cracker, I get really bad stomach cramps. But, I think this will take care of itself eventually. I'm so sad they have to leave today, they've done a world of good for all of my family. It helps me so much to know that I have friends and people that are taking care of things in St. George (especially my kids when they are there), so I can focus on Abby here.

Abby is still feeling as well as can be expected right now. She gets out of bed and walks around, she's back to her old self again-telling the nurses exactly how to do their jobs :) I never thought that I would say this, but it's so incredible to see her old spunk again. Things are pretty stable right now, thank goodness. Because her INR levels (this has to do with the coumadin medication she has to take) were up again, we get to stay here probably until Tuesday, that's if everything keeps going as it is now. Things are still up in the air though, I think that they always will be for a little while now. The one thing I prayed for yesterday was that we wouldn't be kicked out until at least Monday when we can move into our new place, about 2 minutes later the doctors came in and said it would be at least a couple more days. This was so good for me, it reminded me that He is here for me, sometimes right now that's easy to forget.

The greatest thing that happened yesterday was when Paul Cardall came to visit. Even how he got here was pretty amazing. A friend had recommended his book for me and I had started reading it and then I saw his name on Facebook and asked to be his friend and sent him a message telling him a little bit about Abby's story. Then I found out that my brother-in-law Rich had gone to school with him and had already talked to him about coming to see her. Then I found out that a teacher I taught with when I lived here (Teri Cooper) lived in his neighborhood and had also already talked to him about her. I think it was meant to be!!! When he got here, he just came in the room and started talking to Abby about his experience with waiting for the transplant and everything that happened after. He just sat in a chair next to her bed and talked like she was the only one in the room. He said the perfect things, both for me and for her. He made Abby and all of us in the room feel so hopeful and peaceful, it was amazing. These are some of the things that he said:

-He looked right into her eyes and said, "Abby, you will get a heart, you will survive this!"
-Miracles Happen! He said this more than once and then that's what he signed his book and cd with that he brought for her.
-When I asked him if he felt guilty about receiving someone else's heart he said: You might have survivor's guilt, and that's okay, it's normal. The way I look at is that somebody died for me to extend my life, but Christ died for me so I could live forever.
-He talked about how he climbed Mt. Olympus 6 months after he received his heart which was a pretty amazing feat!
-He talked a lot about beating the odds, and that it's good that she's an athlete because she's competitive, and it's all about the attitude.
-One thing that was important to me that he said was that the doctors give you the worst case scenario, they paint a bleak picture (then he laughed and said maybe he shouldn't be telling us that) but that she can overcome anything.
-he showed Abby her scar, she was so impressed.
-He also talked a lot about courage, and how important it is and what is most important is what's in your head.

After he spent so much time talking to us, we walked down to the grand piano, and he did a personal concert for Abby. We pushed her wheelchair right next to the piano and he played 2 songs that he had written. Then he played his own arrangement of I Am a Child of God. Abby just sat and listened, it was the most peaceful I have felt in a long time. Abby told him that she also played the piano, and he said that here is something special about pianos and hearts and that she needs to keep playing no matter what!

We had lots of visitors again because of the holiday, it was really nice. I feel bad when people are here and Abby is asleep or if doctors need to see her, just be understanding with that, she wants to see you and talk to you! And, just know that sometimes if you're here, I might cry, but that's okay. It's too hard to just be stong sometimes, usually I'm good about keeping it in when visitors are here, but sometimes I just can't. We love you and appreciate everything that's happening for us everywhere. Today let's pray that we can keep feeling that peace we did when we were listening to Paul.

Friday, May 27, 2011

abby's point of view

Hi everyone this is Abby. First off i want to thank everyone for the love and support you are all giving me. Thanks especially to my school that game me my ipad, I will use it a ton! I have been feeling really good today! In fact, I have been being really goofy! Today Paul Cardall came to visit me. He was super nice. He talked about when he was going through his transplant, and it made me feel very optimstic about everything. He gave me a signed CD and book, and I can't wait to start reading and listening! This is what he signed, "abby, miracles happen." This is such a true statement. He also did a private concert for me with the donated hospital piano. This was awesome. I wish I could play like him! It made my family and I very calm and peaceful. He was a really nice guy, and a good role model for everyone. One thing that I remember is he looked directly into my eyes and said, "you will get through this." I know this is true, and I know I am strong, and I will get through this. He said to always stay positive and have a good attitude. He made me feel like I can push through this and be strong. It was a good experience. I am thankful that I got the opportunity to meet him.
Thanks again to everyone that is getting me through these hard times. The cards and letters help me so much. I love reading them, and when i'm feeling down i pull them out and they lift my spirits again. Thanks everyone :)


this is britt... if you missed abby on TV yesterday then go to this link and you can watch it :)

May 26th-just a depressing day!

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??

Thursday, May 26, 2011

Wednesday, May 25, 2011

May 25th-One week later

Well, it's been one week since Abby's heart stopped beating and her life was miraculously saved. I can honestly say that it has been the longest, hardest, saddest, most tiring, frustrating, and discouraging week in my life. I'm so tired, but I still can't sleep, it's too scary when I wake up. I looked in the mirror today and was surprised at the dark circles around my eyes, I kind of don't look like myself. If you come to visit, I mean, "when" you come to visit just tell me I'm still looking hot! Abby cried today for the first time since this whole thing started. The IV team came in to poke her again this morning at 4 am because they needed more blood. She just started to cry, but then was tough and just held her breath until they were done. After they left she said, "well, that's the first time I've cried!" Her toughness never fails to amaze me!

I entered the phone numbers in my phone today for the transplant team and Primary Children's Hospital. For some reason this was weird for me. I put 3 *** before the transplant number because when my pager goes off, that's the number I need to call. I'm afraid that when that pager goes off, I'm going to have a heart attack myself and not know what phone number to call. When the doctors made their rounds today, they spent a lot of time talking numbers, things I didn't really understand very well. Then they stood around talking about her for about 10 minutes. I couldn't really catch what they were saying. But they told me that she was looking pretty good, considering. Not a lot of changes. One of the main pediatric cardiologists stayed to talk to us for a bit. Abby had asked about what her scar would look like after the transplant, and I told her to ask the doctor. I thought she was worried about it being too big, and looking gross; but when she asked the doctor and the doctor described it as going right down her sternum, Abby said, "So it will be bigger and better than my sisters ACL scar right? That's awesome!!" She just wanted to win the scar competition, you just never know what's going through that kids head! The doctor also took me outside and talked to me a little bit about the seriousness of Abby's condition. This was very sobering for me. When you see Abby now, she looks almost totally healthy, but she's not. Her heart is very sick, very, very sick. I've been trying to be so positive about everything, but the doctor reminded me just how critical her situation is. It's good to stay positive, but it's also good to be realistic. It wasn't a pleasant conversation for me and I was pretty depressed the rest of the day. Hopefully tomorrow I feel a little more confident about what's going to happen and I feel more positive again.

I love the nickname one of my nieces has given Abby-"lil defib!" I think that is awesome and it might stick until we remove her defibrillator anyway. We had a lot of friends of family again today, and I loved every second of that. It's so fun to watch Abby talk to her friends from school. It was awesome today when her doctor team was all in her room when Abby's friend Ali W. walked in the room, right in front of the doctors, and just started to talking to Abby. The doctors actaully said, "well, I guess that's are cue that it's time to leave!" It was pretty funny. Thank you to everyone that has been sharing their stories of Primary Children's or their tragedies with me. It's comforting for me to hear that you shared many of the feelings I have, it makes me feel like what I'm feeling is normal. Please continue to send me emails, facebook messages, or texts. When I'm getting really down I just sit down and read these things, you'd be surprised how much it helps me want to keep fighting. There's nothing better than receiving an out-of-the-blue text from someone telling my to be strong and that they love us. That's what we need right now!

Thanks for taking care of Britt and Brock back in St. George. Britt's surgery was a success, they had to repair her medial menescus and clean out a big ball of scar tissue, no wonder she hasn't been able to straighten her leg since her ACL repair! I know she had a hard time going through that without me, but I'm grateful for my dad and my friends that took care of her through this, and I'm proud of Britt for getting it done. I'm excited to see them tomorrow, it will be sweet to see my kids all together again.

I started reading a book today called "Before my Heart Stops" by Paul Cardall. It tells his story of being on the transplant list and receiving a new heart. I recommend it to any of you that want to hear another story like Abby's. I've loved reading it because it makes me feel so smart, he's talking about many of the things that we've been going through, and unless we're both wrong, I do know what I'm talking about. Once again it's reassuring to hear that my thoughts and feeling are normal as I'm gong through this.

I heard that channel 2 news is coming to do a story on Abby tomorrow to help spread the word about what we're going through right now. Brock was excited because he thinks he'll get to be on TV. All I know is that after checking my face out in the mirror today, I won't be on TV, no matter what!!! Well, since I just fell asleep just typing this, I think I'm going to try to sleep. I left some things out about today, but hopefully I'll remember to talk about them tomorrow. Keep praying , pray that we can be strong, I'm starting to feel weak and I know I can't do that, I have to be strong for Abby! Help me be strong!!!

Tuesday, May 24, 2011

May 24th-"Miracle Abby's Birthday"-Michelle's Point of View

Abby just barely closed her eyes to go to sleep. She spent most of the day awake and happy and feeling good. Still lots of docs today, but no pokes.......she hates the pokes!! Abby was able to start the day off with the greatest thing ever! Thanks to all the amazing computer techs at Sunrise Ridge Intermediate School, Abby was able to Skype with the entire school. Abby was on my laptop and the school had her set up to their computer and then on the big screen! They had the computer set up so all of the kids could come and talk to her as they were coming into the assembly. The smile on her face was awesome. She loved seeing her friends and it made her feel such a part of the school! After the kids were all in the gym, they sang Happy Birthday to Abby....the whole school!!! She was just grinning and was so grateful that she got to see everyone. It was good for me too, I miss everyone at school so much, and they just better miss me too :) Whoever came up with that idea today, you were right on, you made Abby happy!

Abby then had lots of visitors again today which we still love!! It was a nonstop party in our room, every nurse and doctor that came in was able to leave with a cupcake or piece of birthday cake-that just tells you how many goodies we had! They also decided that she didn't have the virus they were checking for, so you know what that means????? Yep, we got to move rooms again! We're back to a bigger room with a couch/bed for me. I must have been a nag, because our wonderful nurse Jess, kept reporting to me that he was continually calling on the test results so he could move us out of "dungeon" and back to the nice part of the hospital as soon as possible. He also must have been pretty scared of me because then he told me that he'd been checking around looking for the biggest room with the best view and the most comfortable bed. I requested a suite, but I can't complain with where we are. Jess also helped us move, I'm telling you, it's because I'm so tough. I think we'll be here for about another week, then it will be time to move. I think we've found a place for us to stay here now too. It's a 2-bedroom place that's only about 10-minutes from the hospital. A friend of my dad's owns the place and after my mom and sister went and saw it today, they said it was perfect! This is just another one of those things that has fallen into place for us, I knew it would. Everything has just worked out with this whole mess so far, and I think it will continue to. I have also just felt that we won't be waiting too long for Abby's heart, it just hasn't been a concern for me, at all. I just have a feeling that things will work out, they always do when it comes to my family. So far, all of my intuition has been right on, and I think it will continue to be.

I missed Brock and Britt so much today, but I bet they missed Abby even more! It's fun to hear the nurses and doctors talk about how much they love to watch how my kids interact with each other and see how sweet they are to Abby. It makes me feel like I've done something right with them! I hope we can keep this closeness through all of this when we aren't together as much, that's going to be hard. I feel like a real bum ditching Britt tomorrow for her surgery, but I couldn't figure out any other way to do this. She just needs to be okay, I'm so nervous for something to happen, and I know it's just a knee scope, but I'm still so completely worried. I don't think there will be much sleeping going on tonight, that's for sure. Maybe when I've got my kiddos back here with me and with Abby, I will feel more peaceful!

This was my favorite comment of Abby's today, it shows how strong she is: I asked her if she had an okay birthday today considering the circumstances. Her response was, " ya, it was good! I even got to walk up and down the hall a couple of times by myself today, and it felt soooo good to be walking again. Yep, it was a good birthday!" I don't know too many 12 year olds that are happy on their birthdays to just be able to walk by themselves down the hall! I love that Abby will stay happy with just the little things,this is going to be important in the next few months, so I hope she can hold on to this.

My day was a roller coaster, a busy roller coaster. I thought things were going along so great most of the day! Abby was feeling good, she hadn't had any fevers, they ruled out the virus, her lungs sounded like they had less fluid in them, the rehab team said she was far beyond where they thought she should be, I took care of a lot of things I had to do, and we got to celebrate her birthday! Then came the real shocker. Even though I knew it was coming and had been waiting, they came in to tell me that Abby had been placed on the transplant list. All of a sudden this whole situation became so real to me that I almost passed out right there! I was just thinking, "Oh my gosh, my daughter needs a heart transplant! I'm going to be wearing a pager waiting for the call that they have someone else's heart ready for Abby, how can this be happening to us??" It just seems like we're living another family's life right now, like it's a movie, a really, really scary movie. After hyperventilating for a few minutes and working hard to stay on my feet and pretend like I was okay, I was able to listen to the nurst talk about what happens now. Abby is listed as a status 2. Primary Children's can accept hearts within a 1,500 mile radius, so pretty much all around the United States. Abby is in a good weight range, they will accept a heart from anyone 80-210 pounds, 5-25 years old. Her blood type is O, so she can only accept an O heart. They said she has no antibodies, which is really good, she can accept any heart in that range without having too many problems. Then they showed me and talked me through a website-www.unos.org. If you're interested, go to that page and then click on "visit optn website." You can get all kinds of info on statistics for heart transplant patients. Please do not share any of your info with me, I just don't want to know....it's too discouraging for me. I had to ask the nurse not to show me anymore because I couldn't stop bawling, it's just too much for me. So feel free to check it out, but I'm not going to, I would rather just keep thinking that it is all going to work out somehow! Once a heart comes in, they page me, and I get Abby to the hospital for her transplant. Wow, huh?

I am so amazed with everything that is happening back in St. George. I hear just incredible stories every single day. It's weird being where I am and knowing everything that is happening back home and just not even knowing how to express my thanks and let you all know how grateful we are for you. I just keep thinking that in some ways we're lucky right now. We have all of this support, there are so many people that love us and will be there for us. It makes me wonder, "What if this happened to someone that didn't have that support system? What would they do? How would they even survive this?" So, as much of a nightmare as this is for us, I also feel blessed at the same time. It's so contradicting. This is horrible, but so many good things are happening because of it, so many people are coming together and building relationships and bonding because of little Abby. Great things are coming out of this bad thing. Please continue to learn from Abby and the strength that she is showing through all of this. She is an example to everyone, and we need to try to always remember the lessons that her miracle story are teaching us. Good night, time to try to get some sleep, remember to help to take care of Britt and Brock while I can't be with them, and to pray for a heart for Abby....soon!

Monday, May 23, 2011

May 23rd-A day in Abby's life now and just mad

Rough, rough, day today. So many doctors, so many procedures, so many tests, so many needles, just very tiring for Abby. I took good notes today, so you could get an idea of what Abby is going through.

-poking for blood from the IV team
-Chest xray
-vitals signs check from the nurse team
-Check up from the resident pediatrician-checking on source of fever
-Rehab team-3 doctors working with her memory and mental capacity, giving her mental tests
-Visit from the head of pediatric nurse unit-wanted to hear how she's been treated and hear her story
-Major doctor visit-about 8 doctors ranging from the cardiology team to the transplant team. They pushed and poked and listened and discussed things about Abby for about 1 hour
-Life skills counselor-talk to Abby about how she's doing emotionally
-Rehab team, memory specialist-tested Abby on immediate and short-term memory
-vitals signs check from the nurse team
-tb test
-urine test
-transplant team visit, talk about status and look and defibrillator
-social worker visit
-another IV team-more blood needed
-Nose swab-to look for a certain virus
-Visit from friends from school! YES, she needed this in a bad way
-another life skills counselors-talk about what a transplant is
-Lasiks test
-Back on IV
-dental check-still trying to find out cause of fever
-vitals signs check
-room change due to possible virus
-Birthday party with cousins and aunts and uncles and gmas and gpas and bro and sis

Sounds rough, I know, it was. Abby didn't falter though, she stayed strong through the whole day. I even finally asked her if she'd had enough today, and she just said, "I'm okay, no big deal!" WOW!!! She does say she is sick of giving blook and being poked, and I don't blame her. She has bruises up and down her arms and hands. Her blood was clotting today, they were squeezing her little hand so hard and the blood was as thick as mud!! She also had to spend the day sucking on a little machine (I think it might be called an incentive spyrometer, or that's what it sounded like the doctor said anyway) 10 times/hour to loosen up her lungs and get some fluid out, she might have a little pneumonia too. This helps her to expand her lungs, they still haven't expanded yet. We also discovered today that yes, she did have mono about 4 months ago, there's still traces of that virus in her. You'd think she'd be acting sick through all of this, but she acts fine, it's weird. I felt like today was a real bummer day. It seemed like every time someone came to talk to us, they told us bad news. One good piece of news is that her memory is coming back and she's passing all of the rehab team tests! She even said once today that she remembered falling in pe, but she didn't want to say more about that. I'm glad that have people here to talk her through things because I have no idea what to say, how can I know what to say to her when I don't even know how to explain it to myself?
I have so many things I want to say on this blog, and they're all in my head, but when I go to type them, I forget what I wanted to say! This is probably what an AlZheimer's patient feels like. I did make a decision on where we are going to be living for a while. We're going to try to find a little place as close to Primary Children's as possible. We're going to be spending a lot of time here in the next little while, and we need to be close. I had so many offers from friends and family, I love that you offered to let us stay with you, but I think this might be better for us right now. When we get to leave the hospital, I expect lots of people to come stay with me, because that was the only drawback of not staying with other people, we will just be alone. I think that Brittany and Brock will just be traveling back and forth for a while. This is going to be hard on us, we are such a close family, but I can't think of any other way. I am going to need all of my St. George support to become our family and take care of my kids for me when I'm here, and they're there. Especially when they have to go back to school. Luckily, my parents and my sister and bro live there and can help with that too. I'm still trying not to look to far ahead......that's too hard, we'll just take baby steps right now. Now I just have to find a place we can live, I think this will just fall into place like everything else has.
It was so nice today for Abby to get to visit with some of her friends from school. Ellie Larkin and Hadley Cowin drove all the way here (with their moms and brothers and sisters of course) to visit with Abby. She loved it, especially just being able to have normal conversation that didn't involve anything medical. I can't believe they drove here and back in one day just to see Abby! you are amazing. It was great for Brock to see his friends too, he REALLY needed that! I was also so glad to see my sister Meri here today too. It will be nice to have her around for a couple of days, we need people. Britt and Brock will be in St. George for the next few days. The saddest thing I saw yesterday was when they had to say goodbye to Abby when they were leaving, it makes me cry just thinking about it. But they will be back soon! Please help them while they are there! Britt will be having her surgery tomorrow, my dad will be with her. Just text them and ask them what they need, they're like me and will say that everything is fine and that they don't need anything, but they do. They need to know that they will be taken care of when they are in St. George. I need to know that too. That is one of my biggest worries now. Please help me take care of my awesome kids!!!
I hope today is better. I went to bed feeling pretty mad at everyone and everything. Making us move rooms last night was the breaking point. I was so frustrated because I spent a lot of time in the morning organizing our room (this is one thing I can do right now) and then we had to move it all, it's because of Abby's possible virus. If you saw how much stuff we had in that tiny room, you'd completely understand. We've also tried so hard to make it cute for Abby and we had to start all over again. We also will probably being moving back in a few days, so we'll have to start all over again. Well, that covers most of May 23rd, not one of our better days, probably one of my worst, although, they've all been my worst. May 24th, Abby's birthday, just better be one of our best!

Day 5-Saturday, May 22nd-fever and visitors

We're awake already, and have been since 4:00. I can't quite understand why they think they have to send the phlebotomist(I think that's the people that come to do blood work) in at 4:00 in the morning when we're both sleeping. I think Abby feels the same way since as the poor nurse was leaving she said, "I really hate that nurse, all she ever does is poke me!!" I love how Ab said it just loud enough for her to hear. The nurse had a hard time doing her job today, she said that Abby wouldn't give any blood today, she was clotting too much. She was worried and started babbling about INR levels, but I have no clue what she was talking about. I'm kind of glad all the doctors will be coming by again this morning, we can figure out what's up with her blood and her fevers she keeps getting. Last night around 9:00 her temperature went up again, it was 102 degrees. I'm getting good and converting celcius to farenheit! They gave her antibiotics and Tylenol again, but we've got to discover why this is happening.
Abby and I had a pretty good night. It was just the 2 of us, everyone else left before 8:00 last night. I was worried about being able to take care of her all night, but it was okay, and I even got my 3 hours of sleep! This morning we've been doing mad libs together and laughing, we'll fill that mad lib book up very fast, because it's funny. We also had some time to just sit and talk together. We talked about everything that happened and then a little about what's going to happen. She knows what's going on and what happened, but she doesn't remember it, and I'm glad about that. I love how Abby takes it though, it's just like, "yep, that happened, it stinks, but oh well, now let's deal with it and move on." She hasn't complained once....about anything. What a trooper, I need to follow her example with this and toughen up a little bit, but it's hard. I hope she can hold on to this attitude forever, even if we'll be waiting a long time for her new heart. One kind of hard thing is every time she wakes up, she asks if she has her new heart yet. I hope so much that we don't have to wait very long, it would make everything so much easier! She said a really funny thing this morning. I told her she should do some Sudoku puzzles to get her brain working since she doesn't have to go to school today. Her response, "Please Mom, I think I have a dang good excuse!" hahahaha, what a crack up!
Yesterday was quiet as far as doctors coming by, they all must take the weekend off. We still had the nurses come in and check her stats, and a couple of doctors came by, but it was mostly people just telling us all of the doctors who would be here tomorrow. We did have a lot of visitors today which was really nice, we love visitors. I just can't understand why they always end up coming all at once. I'm going to try to start taking a picture of everyone that stops by, I just realized that Britt had her camera here.
Here's her list of visitors for today:
Jon, Brynn, Mina (uncle and cousins)
Jeff, Zach, Josh, Jacob, Seth (uncle and cousins)
Steve, Shea and Amber (cousins)
Desi Roden (amazing, life-saving vice principal)
Diane and Devon (my aunt and her husband)
DeAnn Kennedy (taught 6th grade with me, knew Abby in kindergarten!)
Wendee, Jared, and their 4 kids (My cousin and her family)
Jason Barber (another of my cousins)
Robb, Melissa, and their 3 boys (another of my cousins and their wonderful family)
Britt, Brock, gma, and gpa-of course!!!
I think this is everyone! If I missed you it's not intentional, my brain just isn't functioning like it's supposed to. Thank you to our visitors for the fun things you're bringing for Abby, I'm afraid that eventually, she's going to start getting bored and we'll be able to pull all of those things out for her to do. Thank you for the snacks and food, it will be eaten and it's nice for Britt and Brock to be able to grab a snack without having to buy it in the cafeteria. Thank you for the money, this is kind of hard for me to accept, but we're going to need it :( Thank you for being here and just for talking to us and trying to understand, everyone that I talk to brings a different perspective on this situation, and it seems like everyone always says just what I need to hear. It's just so comforting to know we have support everywhere!
I'm so touched and amazed when I hear everything that's happening back home. When I heard the kids at school dedicated their concert to Abby, it just made me cry. I can't believe all of the fundraising that's going on and I thank all of you that are helping to organize. I feel a little helpless being up here when there's so much to do in St. George too. One of my cousins even asked if they could do a run for Abby here in Salt Lake too! It's embarassing to be in a situation where you need to accept help and money, but I know that this is beyond just me, and I'm going to have take any help we can get. Thank you for all that is being done.
Thanks to Lesley Sparks for making the blog look so cute, we need someone to take over in the cutesy department.....once again "Team Doman" coming to my resuce!
Back to the events of the day.......Abby slept for about 4 hours straight today, right when most of her visitors were showing up, maybe it's her coping strategy! She asked to call Ali Thacker this morning on the phone too. It was quite touching when Abby through tears said, "Thank you for saving my life." She likes to talk on the phone to people but gets a little weepy sometimes, I know how she feels, I do exactly the same thing. We went outside for a little while and played the piano again too. The nurses and doctors all love her and are amazed by her tough and spunky attitude. They're hear to take Abby downstairs for another chest xray, so I'm going to go, it's going to be a busy day, but I'll take lots of notes and try not to be overwhelmed. Keep praying for the heart to get hear!!!

Sunday, May 22, 2011

day 4-Cozzens, Sparks and Tui :)

Because of my friends being here I was able to get a couple of hours of sleep last night, I think I needed it. Abby had an okay night. She did have a fever and that worried the nurses a little bit, but me a lot! It was monitored during the night and they gave her some antibiotics. She got some good sleep during the night too, but it's hard to sleep when the nurses are coming in at least every hour to check on her. I finally caved a little early this morning and had a breakdown. I just started crying and couldn't stop. Cozzens and Les helped me through and let me know that it was okay, maybe it needed to happen because after I settled down a little, I fell asleep again, probably from exhaustion. It's such a roller coaster, you go from feeling completely picked on and sorry for yourself to mad at the world to okay we can do this to why even try to we'll be okay to remembering to be grateful she's even with us then back to feeling sorry for myself. I never quite know what I'll be feeling!
At 5:00 they came in to take some more blood tests on Abby to rule out an infection. Then she had to get an xray to check out how her lungs were doing. When we were in the ICU, the xray tech would come to us, but since we aren't there anymore, we had to go to the xray room. This was good because it got Abby up and out of bed. The nurses and I had to wheel her in a wheel chair, with a cart with all of her IV and other tubes and plugs connected, and then my job was pushing the oxygen tank. I'm such a spaz at pushing that tank! It's harder to steer than you think and I kept getting in the way of the wheelchair. Abby let me know that I wasn't very good at it. While we were waiting for her xray, some nurses pulled up pushing a crib. There was the cutest, little 7 month old baby in it waiting for their chest xray. I was trying to talk to her, her name was Tess, but I couldn't get her to smile, she just stared at me with her pretty eyes. I'm usually a pro a making babies smile! It was so sad to me because the nurse said that they can't ever get her to smile, ever. It broke my heart to hear this, and it just made me be grateful that we didn't have to start dealing with this when Abby was a baby. She had almost 12 carefree, happy years, without having to worry about anything! Things will be a little harder now, she'll always have a lot more to worry about.
The doctors then came by to make their rounds. The head transplant doctor, Dr. Molena, talked to me a little about things. They think that Abby is doing really well and that we might be able to leave the hospital next week some time. I have mixed thoughts about this though. Now I'll have to decided where we go from here. I've had a lot of offers, but I just don't know. I don't want to make this decision, but I better do it soon so they can prepare for us. It will be nice for Abby to leave the hospital, but then it puts a lot more responsibility on me, which I don't feel like I'm ready for. I'm having a hard time even reminding myself to get a drink, how am I going to be able to be in charge of taking care of Abby too? Maybe by then I'll be ready to. Abby really perked up today, she started being really sassy too! It was awesome. Brittany took over the head nurse position, she does Abby's hair, helps her to get her bath, insists on helping her eat, we have to keep track of what Abby's eating-Britt makes a very thorough list. The nurses laugh because today the list said: one sweedish fish, one bite of cheese, two ramen noodles, 2 bites of slushy, and one spoonful of smoothy. Abby gets to pick what she wants to eat from a room service menu. Then we call them and they'll bring the food up to her, if she doesn't like it, they'll bring us something else. I forced Abby to go through the menu and choose something for dinner, her choice.......grapes and waffles!!! Oh, what a funny kid! One time they brought her tray up with a little, red, stretchy guy on it. It's great because my friends made it into a ninja! Abby loved it. Britt has done an awesome job, but Abby thinks it's funny to keep saying, "Britt, you're a bad nurse!" then they just laugh.
We had a lot less doctors today, which was nice for me so I could just process everything for a bit without being given more to think about. That's one of the hardest thing right now. My and mind is so full of things I need to remember, things I need to do, lists of what they've told me, things I haven't taken care of at home yet, things that I need to make a decision on, just so many things, it's making me a little crazy. It sounds weird, but I'm tired of thinking!! Abby had another session with the rehab team to work on her memory. She did so much better! I think she will fully recover from this eventually, in the meantime, it's actually a little funny and we just have to laugh...it's good to have something to laugh about. It's great because she doesn't need that much to keep her busy right now, because she can just keep doing the same things over and over again, because she forgets! Abby was totally joking with the rehab doc. They would show her these little cards and ask what pictures were on them. Abby kept making fun of the pictures, the doc was laughing. Her creative, spunky side was really coming through and I think she ended up making the doc really have to think about what the pictures were supposed to be! Abby is too smart for her own good, I'm pretty sure the doctor left thinking that she was the one being tested not doing the testing! It's nice for me to have Abby ask the same questions over and over again because then I don't have to think as much! We'll have to continue to monitor this for a long time....but her rehab team is awesome!
We love visitors and I want people to come visit if they can! It's good for Abby, the kids, and me! We have always been a family that love people being around us, so don't ever feel like you'll be in the way here, we need you. Yesterday everyone seemed to come at the same time, this is a list of people that were all here at once: Deedee, Mina, Brynn, Jeff, Mel, Zach, Josh, jacob(these are abby's cousins and aunts and uncles), Tui, Les, Cozzens, gma, gpa, britt, brock, me, Marianne from the ward and her sister, and Cammeron Murdock and his wife and cute little boy (more on this later). Holy cow, it was crazy, but then they all left at about 5:00 and we didn't have anyone the rest of the night. So please come visit if you can!! Abby loved visiting with Murdock, for some reason something that has stuck in her head is that Murdock helped to save her life. It was cute to see them sit and talk to each other and I loved that he wrote out what happened and his thoughts and feelings about it and gave it to Abby. This is something she'll always be able to read and treasure. The hardest part of the day for me was when my friends had to leave. I'm just grateful they could come up here, I know it was hard for them to leave their kids and families at home to come see us, but it sure made a difference to all of us. Thanks friends, you raised our spirits and helped me be able to cope a little better. I missed them the second they left, but I understand too.
When everyone else left, Britt decided she wanted to stay the night with us at the hospital. My favorite comment of the day was when she said, "between my short-term memory loss sister, and my sleep-deprived mom, it's going to be a long, long night!!" We decided to get Abby out of her bed and in a wheel chair to take her for a walk. It was great for all of us. We even got to go outside in this garden area, it was pretty because you can look out over all of Salt Lake. It felt good to get some fresh air. Then the greatest thing, we found a piano that Abby could play. We moved her wheel chair over next to it, there was hymn book on it, we opened to a page and she started to play-it just happened to be the song, "I know that my Redeemer lives!" She could only use her right hand because her left hand still has to stay still because the defibbrilator, but it sounded so awesome! She sat and played for about a half hour and then was too tired. But the whole rest of the night, she kept asking when she go back to play again. I think we'll be spending some time there today for sure, I wish I had her piano books for her.
One really good thing today was when my uncle Jeff and cousin Paul gave abby and I blessings today. The perfect things were said, I don't think it could have been any better. I'm so glad I have people around to us in all of our needs. I did feel better and stronger after my blessing. The rest of the night was spent organizing our cards and things, it's so great for all of us to see the support and love we're getting, it really helps! It's now Sunday morning, and I think we're ready for another day. For those friends of mine that are playing bad cop-I slept from 9:30-12:00 last night, that's good, and I just ate a whole banana and haven't thrown it up yet. But there is still a lot of recovery to do, I know because Abby asked for some grapes at 6:00 this morning. I went downstairs to get her some and when I got to the cafeteria I saw the sign that said it didn't open until 6:30, I got so frustrated. Then I saw a kiosk to buy a newspaper, so I went to buy one and I didn't have any change or 1 dollar bills in my pocket, just these two little things made me cry. Stupid huh? just little things, but they should be the easy things, and they weren't! Anyway, we'll just keep taking it one day a time. I sure do love this little girl and she is so dang tough. When they took out her chest tube today, they got her all ready for the pain, and she didn't even flinch, she said it was easy! Tough kid that's for sure. I did get the dreaded question from her today, "Why is this happening to me?" this is one that I'm still struggling with myself and couldn't answer. I can't make sense of that either and it's probably a question we'll be asking for a long time.
Thanks again everyone for keeping us in your thoughts. We're a strong family and somehow we will get through this!

Saturday, May 21, 2011

a little comic relief :)

this is britt.. just making sure everyone knows that.. so although this is awful, here are some things that will make you laugh..
because of abbys short term memory loss she keeps saying over and over again..
"do i have short term memory loss?"
to me: "you're a really bad nurse."
"do i have to re-do 6th grade? cuz i didn't do my crt testing."
"can you put my slippers back on?"
"are narwals real?"
"is this becuase of my asthma?"
"is my arm broken?"
"is this 2012? why did someone say the world was going to end??"
"are the pictures supposed to be moving?"
"is this a dog or an octopus?"
every time i ask her guess who's here she says "murdock" EVERY TIME!!!!!
"that's a stupid narwal"
we say what day is it abby and EVERY time she says.. "tuesday..... no Saturday." she really wants it to be tuesday haha and when we say what year is it abby? she replys every time with "2010.. no 11" i know it doesn't sound very funny, but we ask her every 5 minutes, and she replys exactly the same, it's pretty funny.
she is playing this game called rat on a scooter on my ipad and saying wow britt you are a very bad at this game but really they are her old scores haha so she keeps beating her old scores saying "i just beat your old scores britt" but they are really her old scores haha
she kept typing the same exact status update on facebook
she played the same song over and over again on the piano
she searched narwals on google at least 12 times
these things are so funny to hear over and over again.. and although it is not very nice to make fun of her, it sure is fun for us. and now that my mom has been awake for 48 hours she is getting a little crazy.. so between my short term memory loss sister and my sleep deprived mom, i'm screwed for the night... my mom has also been saying some pretty wierd things.. here are some funny things she has said tonight..
"have anyone talked to you about this??"
"she needs her nose blowed"
"you've been recording me??" no mom, abby.
"everyone of them are the nicest one."
"ya you had great stools" instead of scores hahaha
she sucks at steering the oxygen tank
because they have to track how much abby pees they have her pee in what they call a "hat" thats just sits in the toilet and you can take it out and stuff but somehow my mom forgot to take it out today and peed in the hat haha
mom "right down this hall you will see spiderman" the doctor leading us "actually, that is on the other side of the hospital" ahahaah
she almost stole a diet dr pepper cuz she didn't think she had to pay.. but they caught her. she had no money. and she had to walk all the way back to the room to get it, and then she forgot about it hahaha
there is this revolving door with trees in the center and she said in all seriousness "why are there trees sticking out of the door??" haha soo funny!
well thats about it! some of these might not seem very funny, but when you are as tired as we are, anything like this is funny. abby's doing good! just gotta get her memory back. thanks everyone for the cards and food and everything else! you all are great :)

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 Ali.....you 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!!!


abby got the chest tube out earlier today, and she is feeling much better! they moved her out of the ICU and onto floor 3 where things are a little more chill. she didn't even flinch when they took it out, shes so stinkin' tough. she is sitting upright and talking and eating a little. she is still her stubborn self haha she kept saying to me.. "you're a bad nurse" rude huh?? and she keeps taking her slippers off just so i have to put them back on haha she's funny. her memory is also improving, she sorda knows what day it is and what year, but still has to think about it for a while. she only knows a few things about what happened, and what is going to happen. she knows that she fell in P.E, Murdock saved her life, and she needs a new heart. she doesn't wanna know the rest. well thats it! she is doing much better :) thanks again for all you of you who are doing things for our family :)

Friday, May 20, 2011

2nd day....I can't believe this is happening!!!

I thought this was going to be too overwhelming to do, but when they told me I've only been here 2 days, not 2 weeks, it made me feel like I could do it.

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!