Intermountain Organ Donation press conference and still just waiting.........

We spent the morning doing a press conference for Intermountain Organ Donation.  We met this guy, Sean Coon, that received a heart transplant in 2006.  He owns a motorcycle shop in Sandy, that's where the press conference was held.  Every year they do a benefit ride, this year they raised $8,500 and donated it to Intermountain Organ Donation.  They asked Abby to be a part of it because they wanted someone that was on the transplant list.  It should be on channel 4 and 5 tonight, they said it would be the early news, so 4:00, 5:00 and 6:00.  Abby also did a small interview that Intermountain will use when they educate kids in schools about organ donation.  She did great, I think it felt good for her to be able to give something back, or to do something for someone else.  We've had so many people helping us, it was good for us to be able to do something for someone else.

Other than that, things have been pretty quiet around here the last couple of days.  We've had lots of people stop by and get their "Team Doman" shirts and visit us.  Remember, they're $10, so just bring your money with you when you come.  Thank you to all of you that have bought one, everything helps.  Also thanks to the St. George Lion's Club that is holding a yard sale in Abby's honor this weekend.  I don't have all the details, but from what I've heard....it's going to be good.    Thank you everyone for your continued help and prayers.  I also think I've found a temporary place for our dogs, thanks Krista!  If my dogs don't get along with hers, I'll be looking again, so cross your fingers that it all works out.  Thanks to all of you that were concerned for them and offered to help so we wouldn't have to sell them, that's one less worry for us.  Also, thanks to everyone that emailed Abby, she loved it....it helped to keep her busy.  Her email again is abby.doman@yahoo.com, she loves messages.

We also saw the doctors today, they said everything still looks about the same...so that's good!  We don't do too much each day, Abby just gets tired fast, but she feels good.  I'm rocking the nursing, it's actually pretty easy, it just took some getting used to.  I think Abby trusts me now too! The waiting and anticipating is horrible.  I don't think I'll be able to relax until I get the call that her heart is here.  It's like always living on edge, just knowing that something big is going to happen, but not knowing when.  I'm pretty sure that if it hasn't happened by the end of July I will have a nervous breakdown.....just another reason to get it here fast!!  Abby is much more patient than me, she just wants the perfect heart.  If the reason we're going through this trial is so that I will learn patience, then Abby will never get her heart, because I will never learn to be patient, so we should just give up on that lesson and get her heart here now!!! 

Please keep texting, calling, emailing, facebooking, visiting, etc.  I'm very homesick for St. George and all of the people there....and Abby is too.  We've almost been here 2 months now, but it seems like forever. 

We're home....but I hope not for too long!!!

Yes, we are home, well.....home to Sugarhouse anyway!  Abby is feeling great, so they decided to let us go; but, we are under strict orders to take it easy and we have to go back for an appointment and a blood draw on Friday, then they want to see us twice a week again to moniter her a little more closely.  I am doing fine at my nursing duties, I'm not sure why I was so nervous, I feel much better about things now.  I even started her IV drip in her picc line with no problems.  Tonight I have to flush and put some Heparin in her extra two lumens...no one knows for sure why they put a picc line in with 3 lumens??? Although, it is pretty cool looking!  We spent the morning packing up, talking to the doctors, saying goodbye to all of our favorite nurses and techs, playing monopoly, and then we met Abby's transplant surgeon, Dr. Kaza, for the first time.  I can't believe that out of all of the doctors and people we've met, we hadn't ever met the actual surgeon until today. He was awesome and spent the time just answering our questions and getting us ready and feeling confident for the surgery.  He told us that with Abby still feeling pretty good, he won't have to accept any heart unless it's the perfect one for Abby, he won't settle for anything but the best.  I love this!!  We want her new heart to last a long, long time! 

Here's something interesting........ a couple of days ago, we met the family of another 12-year-old girl that was also an active, soccer player, that got sick on May 28th and ended up in PCMC needing a heart transplant.  Her disease is different than Abby's, and she ended up getting her heart 3 days later...but without it, she would have died that night.  Awesome family, one that we will keep in touch with for sure, and they live right around the corner from where we are staying now!!!  There is also another girl, this one 13-years-old, she was a gymnast, that was at PCMC that is also waiting for a heart. Same kind of thing, from being completely healthy, to needing a new heart, we haven't met her yet, but I'm sure we will.  She's waiting at home too!  For a hospital that usually only does 8 heart transplants/year....this is very unusual!  Makes me wonder what's going on!!!  I love meeting the families of these "heart kids" and hearing their stories.  It makes me realize that we will get through this too and that we're not the only people going through this incredibly difficult thing.

Abby shocked me this morning.  The transplant team asked her if she'd be willing to attend a press conference on Friday that the Organ Donation Center is putting on to promote organ donation, and Abby said YES!!!   She didn't even care what they wanted her to do, she thought it sounded fun!  Ask her to be on TV and she's all over it, but you can forget about her talking to the psychiatric team!!!  I'm glad she's doing it, I'll let you know more when I find out more. 

For now, we're just going to relax at home.  When we got here I was able to do a few of the "normal" thinks that were on my list yesterday, and I loved every second of it.  I did unpack, not because I'm being pessimistic, but because I just needed to start over.  It seems like I every time we go to the hospital we come home with more and more stuff!!  But, it's fun, we love it.  You should see Abby's face when she receives packages and letters in the mail, it's awesome!  Thank you to everyone that has been sending us stuff, it brightens our day.  As soon as I get the call, I will update the blog, so keep checking in.......we're getting close :)

What I used to take for granted........

I think I'm getting worse and worse at playing Monopoly....Abby won this morning and added up her total money and found out that she won by $13,597...then she wrote it on the big white board on the wall for everyone to see as they come in, I will take a picture and post it with the others we've taken this week.  I think it's time for another game! 

The doctors all just came by and after looking at her charts from yesterday, they feel like she's doing about the same, no change.  But they want to keep her for at least 24 hours more and have her spend some time with the child psychiatric team, just to make sure she's emotionally ready.  Abby thinks she is fine, and she always acts so strong and like eveything is okay, but she's got to be feeling a little anxious, and they want to address that.  Maybe it will help with her restless legs too.   The doctors told her that all of the transplant kids need to get help from the psychiatric team at some point in the process, it's just too much for anyone to take in.  So, I think when they give the docs the okay, if everything still looks stable, and we haven't gotten her new heart, we'll be able to go to our Sugarhouse home to wait.  The waiting is horrible, I HATE it!  It's like going to bed every night thinking it's Christmas Eve....and waking up the next morning and it's still not Christmas, over and over again.  I go from trying to be so optimistic and hopeful, to thinking maybe it's better to think it won't happen and just being surprised when it does, and then back to wanting to think positively again.  I just can't decide what is best to do.

I wanted to make a list of things that I used to take for granted, but that I never will again-

-weeding and taking care of my garden and my yard
-Walking through the front door and having my dogs be so excited to see me
-Sunday afternoons and dinner at my parent's house with Meri and Rich and the kids there too
-My daily 5:00 am workouts
-the nights when all of us were home together and we just hung out and played games or watched tv together
-only having to worry about my regular monthly bills
-having something to do every day
-Shave Ices by Harmons
-Riding my bike in beautiful St. George
-being alone sometimes
-being with lots of people sometimes
-Goofing off and making my kids laugh so hard they cry
-Watching my kids play sports
-Not worrying and thinking all the time
-being able to think about the future
-Not being waken up every 2 hours or more during the night
-seeing Abby without being connected to "things"
- no beeping
-being with my friends
-talking about normal, everyday things....nothing medical
-going to church with my family on Sunday
-teaching
-taking my dogs for a walk
-cleaning my house-weird I know
-knowing what's going on with my kids, they've kind of been on their own lately
-going to the store and knowing we'll be home to eat the food
-always being content and happy
-knowing where I'll be and what I'll be doing each day, I love having a plan and a list
-being tan all summer long
-swimming- in the pool, in the lake, and maybe even the ocean :(
-a closet
-a home-cooked meal

Think about us when you do things, and try to enjoy them even more than usual, enjoy them for us!!!
I think Abby would love to receive some emails from you, she's probably getting bored with me and being in this hospital gets old too, it will help to keep her busy.  Her email address is abby.doman@yahoo.com. Some of you have asked for my email as well, because you can't post comments on the blog and you're not on facebook, so my email is domans4@yahoo.com.  Keep your fingers crossed, it must be getting close.

Update from docs-it's possible we can try to go home in a couple of days again!

Just a quick update....The docs came in this morning to see how Abby did overnight.  They're not sure what happened yesterday, and said we probably won't ever know for sure.  They want to monitor her here for the next 2 days, and if everything stays the same, we'll be able to go home.  Abby is going to have to really take it easy though, we'll probably just be hanging around at our place.....no more shopping excursions, movies, or anything else-just mellow time.  I have mixed feeling about going home.  It's so hard to be in the hospital for so long, but I have so much more responsibilty for Abby when I'm home, it's a lot scarier!  Hopefully, her heart will come today or tomorrow so then we won't have to worry about it. 
Thanks to everyone that fasted for Abby yesterday.....we didn't even realize it was Sunday, the days kind of get mixed up in here, so I'm glad all of you picked up the slack for us.  My dad went back to St. George for a couple of days, so Ab and I are going to spend the day playing games, watching movies, doing Mad Libs, eating slushies (they're really good here!),  and hoping it's Abby's heart day!!!  For all of you that worried if Britt and Brock are having fun in Hawaii.....don't worry anymore, they're loving it.  I can't think of too many things better than boogie boarding and hangin' on the beach every day, they're pretty much in what I believe Heaven will be like.  Happy 4th of July, this will be one that we won't ever forget.  

July 3rd- At least we had a 4 hour break from PCMC!! Rough, depressing day!!

Let's just say that today was one of those days that just really stink.  It started out great though.  Abby woke up feeling good, as good as she did most of the day yesterday, so when the docs came by to do rounds, they decided to let us go home!!! Even if her INR was only 1.8, they said it was close enough.  So they started working on all of the discharge orders.  I packed up the room and took all of the stuff out to the car, and then we just had to wait for a nurse to come from a critical care company to teach me about to administer the milrinone through the picc line.  The nurse didn't show up until about 12:30....then my "training" started.  Let's just say that I was a little freaked out.  They kept calling her picc line her "lifeline" and telling me how important it was to keep it completely clean and sterile so that no germs could get in and attack her heart.  Then I had to learn how to clean the empty 2 lumens with saline, and then flush them with Heparin.  This wasn't too hard, I was still feeling okay about things.  I just had to remember to do it every 12 hours, Abby made me write down all of the instructions they gave me....she knows how flaky I've become through all of this.  Then they taught me about the milrinone and how to work the pump, and how to change the bag, and how to put it in the pump, and how to watch for infection, and what not to do, and what to do, and how often to do it, and how vital it was I didn't screw up, and when to call the nurse, and when to come to the ER, and..........I was a little nervous, but thought I could probably handle it, all it is is medicine to keep her pumping properly, what's the big deal???  So we loaded up in the car and went home.

When we got home we got to enjoy a great meal from Olive Garden (thanks dad) and we got to talk to some friends for a few minutes too.  Then we decided we would go relax at the movies, but about an hour into it, Abby said she felt like her heart was beating really fast and really hard.  I could hear her kind of having a hard time breathing too.  We decided to to leave the movie, head home, and call the cardiologist to see what they wanted us to do.  They decided they wanted us to head on back to PCMC and check in so we could see what was going on.  So, after being home for about 4 hours, we got to come right back up here.  I'm so stupid for even unpacking when we got home.......I just had to turn around and repack everything!!

Since we've been here they've done an EKG, ran a test on her defibrillater, took blood for a metabolic panel, taken all of her vitals, and a couple of other things.  Abby feels okay again, and the docs didn't find anything too substantial.  My dad thought that her murmur sounded worse, so we'll have to have Abby's doctor check that tomorrow.  The bad news is that I'm pretty sure we will be here until Abby gets her heart now.  This just makes me want to bawl because it's so hard to be here, I know it's much harder on me than on Abby.  Abby doesn't mind it too much, but it makes me feel a little crazy.  Now we really need her heart to get here soon.  Abby's room looks so boring, I'm going to have to spice things up a little since we'll be here a while.  We will be here now until after her recovery from her transplant, so we're looking at at least 3 weeks, and that's if she got her heart tonight and had an easy, no problem transplant and recovery.  Maybe it's time for some balloons, flowers, and posters again.....I've got to do something to make it a little less depressing.  Maybe prayers tonight should be for Abby to hang in there and me to keep my sanity!!!

Still hanging out in the "hotel" on the hill, but we're ready!!!

Still here, at least 24 more hours, maybe longer.  Abby is feeling better today, she has some energy back, but her INR was only 1.4 still, and it has to be close to between 2 and 3.  They've raised her Coumadin level, but they don't want to overshoot it and go too high, so they're trying to raise it a little at a time, but it's just not budging.   Ab was a little ticked off yesterday when they came to draw blood for her INR and tried to use the picc line so she wouldn't have to get poked, but it didn't work.  They kept trying, but no blood came out.  So they had to poke her, and they did it in her hand which she really hates.  Then later in the day, they had to draw blood again, so they were going to give it another try; but it still didn't work, so they decided to flush it with some medicine.  The problem was that they needed the blood immediately and the medicine takes an hour to work, so that meant......another poke, and in the hand again too!!  Thank goodness that when they came back later in the day to test the line it was a success and they drew her blood from it this morning, no problem!!  Abby was mad because she was told the picc line would help to reduce so many pokes, and she stil had 2 in one day!  Once her INR is where it should be and Abby is feeling better, she gets to make the decision whether to stay here or go to our Sugarhouse home.  It seems like an easy decision, but I think she feels secure here and she gets to have whatever food she wants- whenever she wants, and she's made friends with so many people here, all of those things make it a hard decision.  But, if she goes home, we've got lots of plans for a fun week.  Maybe her heart will come before she has to make the decision. I know what choice I would make, no questions there, a bed would be really nice!!! But, it has to be Abby's decision and I will go with whatever she wants to do.

Just so all of you Salt Lake people know, my amazing friend Lesley, brougt up a bag of "Team Doman" shirts with her when she came to visit.  I know a lot of you have been asking me about getting one.  My instructions were that I can't let anyone have one for less than $10.  I have all different sizes, so if you're interested, you can text me or call me or better yet....just come by and see us and bring your money.  They are the "cool" thing to be wearing in St. George right now!!!  Anyone in St. George that still wants one, just let me know and I'll tell you who to contact to get one.  All of the money will go toward our medical bills.

Thank you everyone for praying that I would beat Abby in Monopoly yesterday......your prayers were answered and I won all 3 games we played!!!  Rude, I know but Abby was on a 4-game winning streak, and she was starting to get a little attitude.  We've had fun visiting with our two new heart friends that are here, Kaidence and Mason, it's so good for me to be able to talk to someone that can relate what I'm dealing with right now, and I can hear their success stories too.  We are doing okay, it's been a long week, and I think I get more tired every day, but at least Abby is feeling a little better, and that's what matters.  This time being here is much easier than the last time....I don't think anything will ever compare to that!!  Just the anticipation I'm feeling right now is hard to deal with, it almost makes me a little jittery.  One of the main doctors came in yesterday and was talking to Abby and said, "I know your mom has always thought that your heart was going to get here in July......"  and I thought she would then say, "But it might not, you just need to be patient!"  But, instead she said, "....and it's very likely that it will happen this month, so I need you to ask any questions you have about the transplant!"  I couldn't believe she said that, I actually got a sick feeling in my stomach.  It's one thing to have a gut feeling about something, but then to have it confirmed made it so much more real.  Another doctor today was saying things like, "It might be nice for you to go home tomorrow for a couple of days before you have your transplant, because then you'll be for a couple of weeks!"  It just seems like things are going to happen really fast.  all of the stories I've heard is that when people are listed 1A, their hearts get here quick.  I hate to get too ready, because you never know, we could still be here for a long time, so mentally it could be hard, but I want to be optimistic.  I  know when we hear the word that it's time, I'm going to feel about a million different emotions all at once, I hope I can cope okay.  Right now, when I think about it, I just get anxious....and scared, really scared.  I promise that as soon as I hear, I will start blogging about the progress....just be ready!!!

Still living at our home away from home away from home!!

So.......Britt and Brock and the rest of the family are flying to Hawaii right now, and Abby and I are still at PCMC.   Most of the day yesterday, Abby wasn't feeling great.  She had lost her energy again and just felt blah, so they decided we should probably stick around until she started feeling better.  She didn't complain about anything during the night, and she's still asleep now, so we'll just have to see how she feels when she wakes up.  I knew she wasn't feeling great when she didn't even want to go cruise around the hospital with me and visit all of her fans.  I have to say that she perked up a little when she had a visit from a bunch of boy basketball players from our school last night!  You can't beat that when you're 12 years old. 

They did another echo on Abby yesterday and didn't find anything new with the murmer they heard, so that was good news.  They also raiser her Coumadin to 3 mg to get that INR where it's supposed to be, but the doc just came in and said it's still just 1.3, so we're just going to have to be patient and wait for it to get back to where it's supposed to be.  Abby just woke up and says she feels about the same as yesterday, just not a lot of energy.  I'm predicting we'll be here a couple more days, but who knows?  It's kind of crappy to be paying the bills for two houses and not living in either of them.  Well, I guess I'm really paying the bills for this "house" too, so I shouldn't feel so bad :) 

My dad will be coming back up here today, so we won't be completely separated from all family.....he chose to spend the time with us, even though he paid for most of the Hawaii trip for the family, crazy....I know, but it will be good to have him here.  It will also be good to see Les and her girls today.  For anyone that's coming to visit, just let us know first.  Text, call, or facebook me so we know you're coming...and remember, if you're sick or have been sick, please come visit when you feel better, we've got to keep Abby healthy right now for sure.  Let's pray for a relaxing, but enjoyable day, and a day that I finally beat Abby at Monopoly.