Monday, April 30, 2012

We are home........the power of prayer is awesome!!!

We are home already!!  That's right, in and out of clinic in one day, and we don't have to stay in Salt Lake or anything.  One thing that I know for sure after clinic today is that all of your fasting and prayers for Abby truly worked!  The power of prayer is awesome.  For the first time in 6 weeks, her white blood count came up, almost to normal!  All of the tests from the GI surgery last week came back negative, and we don't think there is any change in the rejection level, but that's hard to tell from just an echo.  Abby still doesn't feel great, I'm still thinking, and always have, that it's just how her body is handling the cmv..  We will get her results from this week's cmv test tomorrow.  They don't consider the virus as being gone until results from 3 tests in a row come back "clean."  We've only had one.  The transplant team also told me not to be surprised if the number of copies increases again.  This is just a virus that takes a long time to go away in immuno-suppressed kids.  Abby's feeling a little better, but not really.  She still has the same symptoms.  But, at least we now know that there isn't something extremely serious going on.  The one thing that I still worry about is her rejection.  It's hard to tell if it's improving or not, and I don't feel like we are really treating it. The only thing we've done is increase her anti-rejection meds back to the level it was before the cmv took over.  The transplant team thinks that this will be enough to clear it up.  I completely trust them with Abby's care, I know that they will do what's best for Abby.  They are going to keep close tabs on her for the next little while, we have to go back for clinic again on May 14th, to make sure that things still look good.  I have to watch for any changes as well.  We will schedule her annual cath/biopsy sometime in June.  We will have to wait for then to do another biopsy, hopefully I won't feel worried that whole time.  I do feel better about clinic today then I've felt in a long time, it wasn't just all bad news.

As for Abby and I, we are emotionally beat up.  If you see us and talk to us, be nice because tears are just on the surface, it doesn't take a lot to get them started in either of us.  It's been a roller coaster month and we're both tired, emotionally and physically.  We need some home time.  Britt and Brock need us to be home too.  It's time to recover a little.  Now that I've had a chance to think about it a little bit, I'm totally bummed about cancelling our cruise.  Things were so crazy last week, that I didn't even have the change to feel bad, but I do now.....we needed that trip!!  But, I know that we will have more trips in our future.  Everyone wants to know if we cancelled it or just postponed it.  For now, it's been cancelled.  Abby has decided that she doesn't want to get excited about another trip to have to cancel again, so she's thinking of doing something else, but she doesn't know what yet.  We've got time to think about that still.

I have to give a big thanks to Joyce Epperson and the Northern Utah Mustang Organization.  This past weekend they hosted a national car show here in St. George and had a raffle and some events that they donated to Abby.  We feel honored that she was chosen for this.  We were able to attend the raffle at Tuacahn on Saturday-what a fun and caring group of people.  They genuinely cared about Abby and were extremely giving, we are grateful.  You better keep in touch Joyce, I consider you a friend now :)  After the raffle, we were lucky enough to attend the Martina Mcbride concert, and Abby and I got to meet her and have pictures and autographs too!  What a great night, a much needed night for the Doman family!  I was trying to think back to the last time we had done something really fun like that together, and it had been a long time, so long that I couldn't even remember when it was!  We spent much of it laughing and just enjoying each other.  Thank you again everyone that was involved in the car show, like I said, we felt honored and we are extremely grateful.

We are also so grateful for all of you.  Thank you to our ward and the rest of you that did a fast for Abby yesterday, hearing all of the prayers for her was very humbling. I know you are constantly praying and thinking about her, just know that it makes a difference.  I also need to thank all of you that left messages on the blog or on facebook last week, or those of you that texted and emailed.  Hearing the difference we've made to you makes me remember that there's good coming from all of this, it makes it easier to handle.  Those comments mean a lot to me, I do take them to heart.  I appreciate your comments and support more than you will ever know.  Thank you for the people that have sent cards, flowers, blankets (Janice), gift cards (Patti and Wayne), etc.  Wow, we feel loved.  If you've sent something, and I haven't sent a thank you card, I'm sorry, things have been a little crazy around here and I'm just trying to keep up.  

Hopefully the next 2 weeks  will be peaceful, yet busy.  Abby doesn't even need a blood draw until next Monday!  It's time to recover. We love you.

Abby and her transplant friend Miabella!

A letter that Abby's friends brought to her right when we got home last week!  She loved it!

Letters from the girls!
We loved getting these flowers, they're beautiful and they brightened up everything!

Abby at the Mustang Car Show at Tuacahn

VIP backstage passes for Abby and I :)
The Doman crew having some fun after the raffle!

Just waiting for the concert to start

Sweet seats!  We loved the concert!

Abby, me, and our new friend Martina McBride ;)

Friday, April 27, 2012

We will be "polished".........

It's 2:30 am right now, and I should be sound asleep and exhausted, but I'm not.  I think what woke me up was this new cold sore I'm growing in the corner of my mouth that feels like it's the size of Texas, but actually, when I looked in the mirror, is only the size of the top of a pin, but who knows, maybe it will be the size of Texas by morning.  I know this might sound crazy, but as I was trying to go back to sleep, I was overcome with such feelings of strength, contentment, and gratitude that I couldn't even close my eyes. 

As I was waiting for Abby to come out of surgery yesterday, I got a text message from Whitney, a friend I've known my whole life.  She sent me a quote from Elder Richard G Scott, it said, "Just when all seems to be going right, challenges often come in multiple doses applied simultaneously.  When those trials are not consequences of your disobedience, they are evidence that the Lord feels that you are prepared to grow more.  He therefore gives you experiences that stimulate growth, understanding, and compassion which polish you for your everlasting benefit.  To get you from where you are to where He wants you to be requires a lot of stretching, and that generally entails discomfort and pain......This life is an experience in profound trust--trust in Jesus Christ."

I know there are many of you that would do anything to help my family right now.  I have so many people say, "If I could just take away some of the trials you're going through, I would....I would do anything!" and I know that is true.  But for some reason, some unknown reason, these are trials that I must go through right now.  I'm so grateful for the outpouring of help we are getting in dealing with these trials, we wouldn't be able to do it without that help, we aren't expected to go through these things alone.  I also know there's a purpose in the things we are experiencing and as much as I would like to give away some of these trials, I would never want to give away the many blessings and tender mercies that have come hand in hand with the trials.  I just wanted to remind everyone that as you're having sympathy and compassion for all that we've been through, as you're thinking, "that poor family, poor Michelle" remember to think how blessed we have been as well.

Just look at my kids.  I have the 3 greatest kids ever.  If you've had the opportunity to meet Britt, Brock, and Abby you know just what I mean.  They are the strongest, most sincere, most loving kids I know, they just seem to have it together.  We've gone through a lot, but I think it has just polished them even more.  When I look at my kids, I know that they will always be okay, that know matter what happens to them, they will still be successful and that we will continue to be a strong, close family.  I'm so thankful that my kids love each other the way they do and that they love to spend with each other.  Britt and Brock have become so close while we've been away, I consider this a blessing.  They both love Abby with everything they have. I am lucky.  I have a job that I love and that I'm think I'm good at.  I do miss teaching when I'm not there, it's just a part of who I am, what a blessing to be able to love my job! The people I work with are have been amazing, I know I have a job at Sunrise Ridge right now because of the people that are there.  They have been so helpful in taking care of things back in my classroom, it's one thing that I know I don't have to worry too much about.  I have family and friends both in St. George and Salt Lake that I know I can get help from at any time, there are many people that I can turn to when we need it, I never feel like I'm going through this alone.  I have the perfect ward right now too, they are always to help with whatever we need help with, and they are always checking in with us to make sure we are okay.  The greatest blessing, and I've said this before, is all of the new people that have come into our lives this past year.  I've had the chance to make so many new friendships, and I consider each one a blessing.  All I have to do is to look back at the phone calls, text messages, emails, facebook comments, etc. to know how many people are thinking and praying for us and truly care about us.  How can I not feel grateful?  Knowing so manypeople are there and care makes these trials worth going through.

I am so blessed.  There are some people, both young and old, that were in our lives that have decided it's too awkward, or it's too hard to be a part of what we're going through and so they have distanced themselves from us, and I can't help but to feel sorry for them.  Yes, it's hard, but they're also missing out on all of the blessings that have come from this as well, and they are missing out on the Doman family, and that is sad.  I do understand it's hard for people to know what to say and how to act around us, but when you're ready to be there again, we'll still be here and we'll be as accepting as ever.

I am grateful for the trials we're going through.  Your prayers are being felt here tonight because I feel strong again and am ready to face whatever tomorrow has to bring.  Abby will be okay, my family will be okay, I will be okay, we will be polished.

The plan is to stop by clinic in the morning, well later in the morning, I guess it is already "the morning."  Dr. M. wants to make sure everything looks good before we go home.  So far, all of the tests have come back negative, and everything looked good in surgery yesterday.  We are still waiting for some results and won't get those until next week.  I want them to find something that all it takes is a dose of antibiotics and Abby will back to herself, but that's a lot of wishful thinking.  We have to come back to Salt Lake on Monday for a clinic visit and an echo to make sure the rejection isn't getting worse and to get more results and set up new plan of action.  Hopefully, this Monday clinic visit won't turn into another week long clinic.

I'm tired now, but I feel good, I feel content, I feel strong, I feel grateful.

Thursday, April 26, 2012

Surgery today....we are praying for answers!

I think today is going to be a long day!  I gave Abby her last that "cleanse" drink at 11:00 (we are always exact at following doctor's orders!!) then it was one of those nights where you really don't ever fall completely asleep.  The one time I did fall asleep I had a dream that we were at clinic, and Abby was being completely disrespectful to Dr. E.  and the transplant team.  Not only was she was refusing to let them listen to her heart, but she was yelling at them too.  She was screaming, "You can't just listen to me whenever you want, it's my heart"  and it was in a nasty, loud voice with spit flying out of her mouth.  Dr. E was pleading with me to calm her down because she was so out of control.  This is actually really funny because it's so opposite what it's like at clinic, and so opposite Abby.  Believe me, it wasn't funny in my dream, I was totally embarrassed, especially because I had no control of Abby....I couldn't calm her down!  Anyway, it's going to be a long day.  For any of you that ever have to drink 64 oz. of Gatorade with Miralax mixed in, after taking 4 tablets of Dulcolax, and drinking 10 or more cups of clear liquids without eating solid foods-It's not a good idea to try to jump on the trampoline, even if it is just for a second, Abby learned this the hard way last might be better off just chilling in front of the TV :)  The cleanse hasn't been fun for Abby, she's loved the fact that she's not allowed to eat anything-we've been forcing her to eat for the last 2 weeks because she feels so crappy afterwards, but she's hated needing stay so close to the bathroom.  I've had lots of fun with all of the puns......"This is a real bummer," or "This is crappy," or when Dr. M. said, "It will be nice to get to the bottom of all of this," etc.  But I think Abby is probably really tired of all that by now, and tired of me asking,"Hey Abby, where are you going?" with a smile on my face and then "Hey Ab, whatcha doing in there?" every time she gets up to go to the bathroom.  Thankfully, she only has another 1/2 day of this before the surgery.

Now to the serious stuff.  Yesterday was an interesting day.  We went to Primary Children's to have labs drawn again, and to turn in a stool sample.  The thing that was really stinky (hahahahaha) was the first time, we didn't turn in enough, so we had to go home and try again!  They are in the process of testing for many different things, including C-diff, Giardia, antibody tests, and many more.  That will hopefully give us some more information.  We also met with the transplant team again.  We did receive some good news, the CMV tests came back and it is gone!!!  That's good, but that also probably means that there is something more going on with Abby.  After hearing this, we were able to focus more on Abby's rejection status.  There are 2 different kinds of rejection, cellular and vascular.  I don't know a lot about this, but I'm going to tell you some of what I've learned from other parents and the docs.  Please don't take anything I say medically in this blog as fact, it's just what I think I've been told, and sometimes I can get confused.  Cellular rejection is what is most common and is the kind of rejection Abby has been in before, it takes place in the cells.  If the cellular level is a 1 or a 2, it is okay, it's not treated until it's 2.5 or above.  Abby's cellular rejection level on Monday was a 2, no worries there.  Vascular rejection takes place in the vessels around the heart, so the heart can be damaged because of lack of blood supply.  I'm not 100% certain about this, but I've heard that you can feel more sick when in this type of rejection, and that it can have more long-term problems.  There isn't as much known about vascular rejection because it isn't as common, one article I read said that only 18% of patients ever experience it.  Vascular rejection is treated if the level is 3 or above, Abby was at at a level 3 on Monday, so at least it was still considered "mild" rejection.  Both types of rejection can be treated by changes in immuno-suppresants, with steroids (prednisone) which is what we've done in the past, and then if that doesn't work, with treatment in the hospital.  For now, and because Abby still has a low WBC, we are just increasing her immuno-suppresants, thankfully for Abby, no steroids yet.  Vascular rejection makes me nervous, so I hope we can get this under control.  If anyone out there has more info on rejection, or finds mistakes in what I said, please let me know.....I am a true rookie at all of this still!!  After meeting with the transplant team yesterday, we decided that Abby likes to ride right on the edge, which is good and bad.  She is always just borderline, just in between, what course of action to take.  She's been like this with her cmv, blood counts, rejection levels, and everything!!!  It's frustrating for the team and for us!  I guess we should be grateful it's always just borderline and not worse.

With everything that's going on with Abby right now, we decided it would be best not to plan on going on our Make-a-wish cruise next month.  This was hard for both me and Abby.  We've been looking forward to this since last July when we missed our Hawaii trip too!  Our family really needed a break from everything that's been going on this past year, but I guess we will just delay it a little more.  Brittany wasn't too upset, because now she can go on her senior trip to Disneyland with her friends, it was scheduled for the same week.  Brock wasn't too upset either because he was going to have to miss a football camp, and Brock doesn't like to miss anything that has to do with football!  But Abby and I were not happy.  I don't think my mom and dad and Meri and Rich and the kids liked hearing this either because they had planned on going with us.   I told Abby we should just plan to do it later, but she's at the point right now that she's scared to plan anything, and wants to go on a shopping spree.  The problem with that is that she's already got everything she could ever want!  I don't know, we'll think about it when we get through this.

We check for surgery at 1:30 today, the surgery will start at 3:00.  She's having a colonoscopy, endoscopy, and sigmoidoscopy.  I don't even know the difference between the 3, but it doesn't matter.  All I do know is that they are going in from both ends to get a good picture and that it will take about an hour and a half.  My 2 friends at the desk in the surgery waiting room, always have such a sympathetic look on their face when they see me, they always make comments like, "Oh no, not again Michelle!"  Yes, they know me by name, we are friends now.  I can't wait until I see the look on their faces this time-twice in one week even!  We should know some of the results just a few hours after the surgery.  We will stay at my brother's house tonight, and then depending on the news we get, hopefully we will be on our way home to St. George tomorrow morning.  I really need to be to work next week.  I miss my classes and I need to be preparing them for testing.  I've also missed so many days of work, that I only get paid for the days I'm there now, and I've now missed 3 weeks in April.
There's also a big fundraiser going Abby for this weekend as a part of the National Ford Mustang car show that's taking place at Tuacahn.  It would be nice for us to be able to attend some of the events.  As soon as I hear any news, I will let you know.  Thank you all so much for caring about Abby and keeping her in your prayers this past month.  I'm hoping and praying for answers today, no matter what it takes, I just need Abby to start feeling like Abby again!!

We have a little heart friend that needs a miracle.  I've mentioned him before, he's only 4 years old and is waiting for his 2 heart.  At this point, they have done everything for him that they can, and because of his antibodies and his blood type, there's only a slight chance he will receive another heart.  I was lucky enough to finally meet his mom this past week.  She is the perfect role model for me, full of complete grace and poise as she's going through all of this, and just full of strength.  Our struggles look miniscule compared to what they are facing right now.  I've heard that our ward is having a ward fast for Abby this Sunday, can I please ask that you also think about and pray for our friend Matthew and his family as well!  One thing we do know firsthand is that miracles do happen!


Tuesday, April 24, 2012

Wow, not the news we expected!!

The title of this post says it all, not the news we expected, that's for sure!!  Abby and I were both a little nervous for clinic yesterday, she hadn't been feeling any better, if anything, she'd been feeling worse.  Abby was certain she was in rejection, I was certain her CMV counts had gone up, not down.  We both started feeling more positive after we heard that her echo looked, then we talked about her meds and her symptons, and we were feeling even better.  But then, Dr. M listened to Abby and heard a definite gallop in her heart, which can be a sign of rejection.  Before scheduling a cath/biopsy, they decided to do an EKG to see if it showed anything also looked good!  Now we were feeling real good and were packing up our bag to start the drive home.  That was when the tranplant team came in and told us that with Abby feeling as bad as she had (extra fatigue, upset stomach, etc.) and with the gallop, they wanted to go ahead and schedule the biopsy.  The soonest they could fit us in was 2:30 so Britt, Abby, and I headed to Gateway to spend some time.  I knew that they wouldn't let us go back to St. George until we got the biopsy results back today, so I sent Britt home on the shuttle that night so she could be at school today.  The St. George Shuttle should really be loving the Doman's by now, I swear we are keeping them in business!  I wish there was a ride 10 times, get one free punch card or something!  Thanks to my Aunt Diane for driving Britt to the shuttle, I couldn't leave PCMC during the cath to get her there, she was a life saver!  Now it was time to sit and wait for the pager to go off to tell me that Abby was done.  The cath usually only takes about an hour, sometimes even less, but yesterday it took about an hour and 15 minutes, and every minute past the 60, I was getting more and more tense! When it finally went off, I was so sure that there was a problem, that I had prepared myself to see the whole the transplant team sitting in the little office by the cath lab; But, it was only Dr. Day, and he only had good news!  In fact, he said that Abby's pressures looked even better than his :)  Now I was feeling really good about the biopsy results we would be getting, last night I had even convinced myself that we would get a call today at 9:00 am, telling us that the biopsy was clean and to go on home!  But, it didn't happen that way.

We didn't get a call at 9:00, or at 10:00, and then my impatience took over and I called the transplant coordinator and left a message to call me and please let me know what was going on.  In my mind, the reason they hadn't called was because she was in rejection and they were trying to figure out how to treat the rejection and the CMV at the same time.  So much for the positive thoughts of a clean biopsy!  Dr. Molina called me back at about 10:30.  You know it's not good news when the doc calls instead of the transplant nurses!  She said that Abby was in mild rejection, nothing too serious, but with her CMV, they wanted to talk to infectious disease to see what should happen next.  I got the feeling from the phone call that we would be admitted again and started back on the anti-viral IV as well as up her immuno-suppresant drugs to fight the rejection.  Dr. Molina told me she would call me again as soon as she heard back from them.  Not the "go on home" news we expected!  I prepared myself mentally for another 2 week hospital stay.  At noon, we got a call from one of the transplant coordinators that the infectious disease team was having a meeting at 12:00 to discuss Abby and that we should hear back at 2:00.  So, Abby and I did some more shopping, then went to a park and laid on a blanket, and tried to read and relax (hahahahaha)!  Finally, at 4:30, I got the most unexpected phone call of the day.  They didn't want to admit Abby, they didn't think the anti-viral was doing the trick (obviously since she was getting sicker, not better) so a hospital stay for that would be worthless; BUT, they think that Abby has another infection somewhere in her intestine.  She's had an upset stomach and diarrhea for the past month or so, and we've been contributing it to the CMV.  But they didn't think that the level of CMV that Abby has would cause as strong of symptoms as she's been experiencing, they think there must be something more going on.  So, they were in the process of scheduling a colonoscopy and intestine biopsy......yes, another surgery.  For those of you that know anything about this, they are going to be going in from both ends, I guess they want a really good look.  I couldn't help but to think, CMV, rejection, and now another infection too, are you kidding me?????  Later, we found out that the soonest they could schedule the surgery is Thursday around noon, I should get the final time tomorrow.  We also need to go back to the lab tomorrow so Abby can have even more labs drawn, they are going to look for lots of different things!   My poor, sweet Abby has had enough.  I've never seen her so discouraged and worried. I think the straw that broke the camel's back was when they told her she had to collect a stool sample do you tell a 12-year-old little girl she has to do this??  Her coping mechanism is just to sleep. As soon as we got to my brothers, she went straight to the couch and has been asleep ever since.  It kills me to see her feeling so low, I just hope that somehow she can wake up tomorrow with some renewed strength, ready to fight again.

I hope the same for myself.  We have both hit our low point, I think we've bottomed out.  The roller coaster of emotions today and yesterday has been tough on us.  It's been a constant fight to think only good positive thoughts, only to have crappy news hit us right after.  I don't even know what to think about the surgery Thursday, I know nothing about it!  I don't even know what to ask, it kind of hit us from out of nowhere.  Not only that, but yesterday at clinic they also told us our Make-a-wish cruise next month wasn't looking good for us either.  If her CMV counts didn't go down, we would have to call and postpone.  You should have seen the tears in Abby's eyes when we got this news, it would've broken your heart!  It's just so hard to see the discouragement in her face.  For now, I've had my meltdown, talked to some friends that knew what to say to help me, and I know that tomorrow can't be as bad as today.  I also know that things will look better in the morning when I'm not exhausted.    We can feel everyone's prayers, they do give us more strength to deal with things.  Britt and Brock will go another week without us, so be extra good to them if you see them, they probably feel like orphans and that they've been abandoned.  At least my mom and dad are around this week and will help take care of them, thanks again mom and dad! I know that we will make it through this.  I honestly feel like they are going to do all of these tests and not find anything, that it's just Abby's way of responding to the CMV, but since I've been wrong on everything today, I'm probably wrong on this as well.  

I know that this post is a little jumbled, and that I couldn't decide whether to use present or past tense as I was writing, and that I kept switching back and forth, but to tell you the truth, I'm too tired to care.  I've got too many other things on my mind, hopefully you could at least make sense of everything.  Thank you all for caring so much about Abby and the rest of us, we love you all.  

Saturday, April 21, 2012

Long, rough night-please no rejection on Monday.

It's been a long few days.  It seems like little Abby is feeling worse, not better!  Last night was the low point, she woke up at about 2:00 am feeling sick to her stomach, then she said it felt like her heart was beating really hard and it was kind of hard to breathe.  I listened to her heart, took her blood pressure and temperature, and watched her.  She seemed okay, and all of her vitals looked good, but she was definitely not feeling great.  She also said she felt like it was stuffy in our house, so we went and hung out outside for a while.  At least it was a pretty night and not too cold!  After about 2 hours, she finally fell asleep.  Needless to say, we are both a little tired today.  Right now she's having her infusion of cytogam.  The nurse came to put her IV in on Thursday, because the only nurse that thought they could find a spot for it was going out of town Thursday night.  She didn't feel like anyone else could get an IV going for Abby.  It was put right in her wrist, which meant that for 3 days, she couldn't bend it.  It was very uncomfortable for Abby.  If her CMV levels don't go down this week, we might try something different.  I hope so, because we've been doing this for almost 4 weeks now with no improvement.  I'm scared to death that Abby is in rejection, she's nervous about that too.  They've lowered her immuno-suppresants in hope that her body will fight the CMV more.  For those of you that know what I'm talking about, her prograff level is only at 6, instead of the regular 8-10.  It's going to be a stressful clinic on Monday, I'm just hoping and praying everything looks okay, Abby's biggest fear is rejection, she does not want to go back on steroids!!!  I know that Abby is feeling a bit beat up right now, she really needs to start feeling better.  I think I'm starting to feel it too, this has been going on too long.  Abby said she feels like she'll be admitted again Monday, but I don't know, I hope not!  I do know that our Make-a-wish cruise is coming up in about a month, and I sure hope she's feeling well enough by then that we can go!  It really wouldn't be fair to miss another planned vacation, so she's got to perk up!!

On another note, I took Brock to see the orthopedist on Thursday for his messed up ankle.  Yes, sometimes lately I do feel like we should just move into the hospital.  The doctor said that Brock's injury does require surgery.  They don't know how intensive it will be, and won't know until they get inside the ankle and look around.  But, no matter what, he would be on crutches for at least 6-8 weeks, then it would take a while to work up to running again.  The doctor said it was a pretty bad injury and he was surprised Brock played basketball all season with it.  Because Brock loves football so much, and doesn't want to miss anything to do with football this season, he's decided to play through the pain until after football season, and then have the surgery.  As a parent, I had to respect this decision, only Brock knows how bad it hurts.  I worry that it will get worse, but we'll just have to hope that it doesn't.  This goes against the doctors recommendation, he thought Brock should have the surgery next week, but I think it will all work out.  That means that after going 15 years without my kids really getting hurt or injured too badly, all 3 of them will have had surgery in the last 2 years.  Wow, when it rains, it pours I guess. 

There are lots of positive things going on around here too though:

-The shave ice stand finally opened, and I LOVE shaved ice!!!!  I think I could eat 1/day until they close again!
-Britt got another scholarship to Dixie State!!  Keep 'em coming Britt!!
-My dad's getting the boat ready to go.  We weren't ever able to go boating last summer because we were in Salt Lake, so we are even more ready.  Believe it or not, I can wakeboard and even cross the wake!  Abby is awesome on the kneeboard-360's, jumping the wake, etc.  As soon as she's allowed to swim, she'll be in there tearing it up.  Brock is the best surfer, and Britt loves that tube, even thought she does get flipped off every time!  Boating with Mer, Rich and the kids is always a blast.  I can't wait.
-My yard looks good this year!  Thanks to my mom's help with the weeding, and Brock doing a good job on the lawn, I have to admit that our yard looks the best on the street :)  Our flowers are blooming and our garden is planted.  last year, we left just as the veggies were starting to grow and we missed all of them, but not this year!!  I love it when my yard looks nice.
-Britt and Brock are both trying to get a summer job, so if you know of anything, please let me know.  One thing I do know about my kids is that they know how to work and will do a good job.  Britt needs a job more that Brock, but Brock wouldn't mind doing something too-until football starts anyway.
-It's almost summer and I love summer.  I love the heat, and going to the pool and the lake, and when it's still warm at night, and when it's light in the morning and light at night, and when I can wake up a decent time and go to the gym, and when I have time to catch up on everything.  Yes, I love summer and it's almost here.
-Britt has finally decided that it's important for her that our house is very clean, and so she's taken it upon herself to keep it that way.  Our house is usually clean anyway, but Britt has become OCD about it....and that's okay with me :)  Thanks Britt!
-I finally paid off Britt's knee surgery's.  Now, I can start working on the transplant.
-Brock and his friends are starting to the love the minivan!  I don't know if it's just because of the awesome sound system Brock installed for his birthday, or just because it's the VAN, but I knew they'd all like it if they just gave it a chance.
-It's shorts and flip flop weather......enough said.
-Our cruise is only a little more than a month away.  We need a vacation more than you know!!
-We are only 3 months away from our 1-year post transplant celebration.  I've been told that once your 1-year out, everything gets easier, I sure hope that's the case!

Hard, rough things going on, but always good things too.  The dreaded day, May 18th, is coming up fast, it's looming right around the corner, and that makes me nervous.  We've decided that we are all just getting out of town that day, I think we'll head to Vegas for some shopping.  Abby will not be going to school, and especially will not be going to PE.  I will not be taking Britt for knee surgery, and I will not answer my phone if it's a call from my principal.  Once we get through that day, it will be smooth sailing from there on out!  Please pray for Abby to stay strong, she's starting to get discouraged, and please pray that she'll start feeling better soon, I can't stand to see her feeling like this much longer.  The goal is for her to feel good by May 24th, her birthday, so that we can go on our cruise on the 25th. 


Monday, April 16, 2012

Abby's update and our video of the past 8 months :)

*** We fixed the link to Abby's video: part 2

How is Abby??  No change in how she feels, but we found out today that her CMV copy count has gotten worse.  We are almost up to 1,000 now. We were down in the 700's last week, but now we went up to our high.  We will be having the home health nurse come out again on Saturday morning to give her another IV infusion of cytogam.  You'd think that a medication that costs about $5,000/ dose would do the job!!  On Monday, we head back up for clinic where we will reevaluate our plan. It's possible that there's a drug resistance and we'll have to switch meds....I'm not sure what happens next actually, I guess that's why I'm the mom and not the doctor-that's one thing I don't have to worry about, I have to trust that the transplant team will do what's needed to make Abby better. 

It felt so good to have the weekend to catch up with things.  I think that going from 2 weeks at the hospital, to school the very next day was tough.  I felt like I had neglected many things and wasn't able to get on top of them.  I love my job and I love teaching, it's something that I have always felt very comfortable and confident doing.  Juggling taking care of Abby's needs with teaching has been a struggle, but it's what needs to be done, and I can do it.  I wouldn't give up either of those things for anything, it's just a matter of me being able to do both, and I'm getting better at that every day.  Going back to school after being in the hospital reminded of returning after Christmas break, you just feel a little "off" for a  few days, but then you get right back into your routine and all is well again.  I'm excited to finish off the year with my classes, I teach some amazing kids this year and I wish that I wouldn't have had to miss the beginning of the year!! Being at school also gives me a little escape from all of the worry and responsibility, I can totally switch gears when I'm there and just focus on my job, I think that's good for me. 

If you haven't had the chance to watch this awesome video that my good friend Amber made for us, you should!  I think Amber did a great job at capturing the overall feeling of our past 8 months, thanks Amber, we love it!  I left the link below.     Maybe this will be the week that Abby will turn the corner and start feeling better!!!  Just click on Abby: part 1 to see the first half of the video!

 Abby: Part 1               Abby: Part 2

Thursday, April 12, 2012

"Always worried, always responsible, and always grateful"

I just wanted to give you a little update on Abby!  Yes, we are home and happy about that!!  It felt good to sleep in a real bed and hang out in my own house with all 3 of my kids!!  Unfortunately, Abby is not better yet.  She still has CMV, almost as bad as she had it in the beginning.  We have arranged for a  home health nurse to come on Saturday mornings to give Abby an IV of Cytogam.  Cytogam is antibodies taken from healthy human blood, that helps to fight the CMV.  We'll continue this treatment, then check her levels, once a week.  When her CMV levels come down enough, we can stop the cytogam infusions.  We also have to go back up to clinic on the 23rd.  Abby feels okay, but she's real tired and she still continues to lose weight.  When we asked the transplant team if she'll be better by our make-a-wish cruise, they said that she should be okay if she really takes it easy until then.  That means no soccer for a while-Abby wasn't too happy about that!!  School will be hit and miss for the rest of the year too, and she'll have to wear a mask again-not Abby's favorite thing to do!  But, I guess this will all be worth it if we can go on our cruise!!  Abby misses her friends, but she's taking things in stride, like she always does.  Her high spirits and positive attitude continue to amaze me every day!  With everything she's been through the past couple of weeks, she has a right to be a real grouch, but she never is, she just takes it with a smile on her face.

Going back to school and trying to take care of Abby and her new needs has been hard for me.  I couldn't help but to laugh out loud when I heard that many of my students thought I had been gone from school because I was on a cruise!!  HaHaHa, boy were they wrong!  I had to put those rumors to rest!  I have to leave Abby home everyday while I work and I don't like that.  Add to that the new worries and stress with what we've been going through, and it makes everything even just a little harder.  I even checked into taking the rest of this school year off to take care of Abby and myself for a while, but financially, it just won't work out.  Missing the last 30 days of school would cost me about $10,000-definitely not worth it!  I keep telling myself that I just need to make it through the school year, but I can't do that, I can't be a lazy teacher and just "survive", I've tried and I just can't.  I care too much about my students and I want to teach them as much as I possibly can before they leave my class, it's my responsibility as their teacher.  So, I'll just keep running myself into the ground until May 23rd, then I'll get a break, and a minute to catch up with everything that's happened to us the past year.  Sometimes it's hard to keep up with everything that I need to be doing, and so many people have offered to help, but they are all things that I need to do.  I wish I could just give someone else the constant worry and responsibility for a day or two.....but it doesn't work that way. 

I recently read an article that was posted in a heart tranplant site, that was titled: "Always worried, always responsible, and always grateful."  It was an article that summed up interviews from many different parents of school-age heart transplant recipients.  The title says it all!  This role as parent of a child that has had a heart transplant is full of worry and responsibility, but everytime things start to look too hard or too overwhelming, the "always grateful" seems to take over.  Today, right after I got off the phone and learned that I couldn't take the rest of the school year off, I was feeling pretty discouraged.  I decided to look at my facebook page, and that's when I learned that one of our heart friends had received "the call" for her heart and was waiting at PCMC!  All of the emotions from that day came right back to me.  I could'nt help but to feel all of those same things I felt on July 12th, only 9 months (exactly) ago!  Although there were lots and lots of emotions going through me, the one I felt the most was one gratitude.  Gratitude for the donor family, gratitude that Abby got her heart when she did, gratitude that we are home together, gratitude that Abby is still with us and survived May 18th.  Pure gratitude.  It was a good reminder for me to put things back into perspective.  I haven't heard how our friend is doing, she's probably just going in for her transplant now, but I know that right now they are also feeling complete gratitude.



Sunday, April 8, 2012

The bad, the funny, and the good.........

April 6th, April 7th, April 8th-The bad, the funny, and the good!!!

The Bad:

-They just came in and told us that Abby's culture from the picc line came back as a rare infection-I can't remember the name, but it's usually something that grows in the mouth and ears-but not for Abby of course, she really likes to mix things up.  We're still hoping for it just to be a peripheral infection, they took ANOTHER culture, and we should find out tomorrow.  So, tomorrow, we get to visit with another team here at PCMC!  The infectious disease team will be here in the morning to evaluate Abby and decide what the next course of action will be, and I thought that we had now seen every team here, wrong again! Hopefully this will turn out to be nothing much, and we can treat it with oral antibiotics at home!  They are still trying to determine what antibiotic will kill it, I hope it doesn't take too long.

-I just had to send Britt and Brock back to St. George.  It doesn't matter if it's only for one day, or one week, it's always hard.  In fact, I hate it, it's probably the very worst part of all of this.  I guess I should be grateful for the few days that we had this weekend and that we're nearing the end.

-My addiction to Diet Dr. Pepper has gotten worse, it's hard when there's a soda fountain just down the stairs!  I think I'll try to quit if we ever get out of here, maybe I should make it my PCMC treat!

-I am now so out of shape and flabby, I've lost everything that I worked so hard to attain a few years ago (except the weight of course, it's all coming back.)  I just need to get back to my normal routine-I miss working out, I miss my swims, I miss my bike, I miss the gym.

-Abby's got bruises up and down both arms and hands, and she has sticker marks up and down her chest and stomach ( I hate trying to get that sticker gum off!!!)  Poor kid!  Guess how many times Abby has complained since she's been here???  That's right, never, she just smiles and takes it as part of her new life.

The Funny:

- 2 nights ago, Brock and I left for the night and went and slept at my brothers house (more about that in "the good!" section), I felt okay leaving Abby and Britt because a few of the nurses and techs were working that we've gotten pretty close with over this past year, and I "thought" that they'd take care of them.  I guess, while they were still up having a blast and goofing off at about 1:00, a bunch of the staff came in and started to tell the girls all of the ghost stories at Primary's.  They spent the night creeping each other out.  I now know which pod is haunted and by which ghost, which room is haunted, which elevator to watch out for, and the story behind the walkway to University Hospital.  I'm shocked that Abby will even sleep here anymore!!    Thanks to my PCMC "friends" for taking such good care of my girls while I wasn't here :)

-Britt decided to take a nap during the day, because she was so tired from being scared the night before.  While she was asleep, Brock went out and sweetly asked our nurse if he could borrow a marker.  The marker just happened to be blue.  He then took the marker and wrote "DORK" on Britt's forehead, and he gave her a unibrow.  I don't know how she slept through us laughing so hard.  When she woke up, she had no clue anything was wrong.  When the nurses walked in our room, I would give them the signal not to say anything to her about it.  We couldn't stop laughing though, so when she asked what was so funny, I told her that while she was sleeping, she sat up and yelled "Dork!" as loud as she could and that everyone heard her.  For some reason, we had nurses from all over the floor coming to look in our room.  Britt thought it was so funny that she did that and couldn't even remember doing anything, that she painted "Dork" on her Easter egg, and she painted it in blue!  We laughed for a good hour every time we looked at her!  When she found out, she was a little mad, but we all laughed so hard and for so long that she got over it.  I'm just glad she let us take a picture of her before she knew what was going on, this will be something that she'll never forget.  I wish I could've convinced her to go buy drinks in the Rainbow Cafe before she washed it off!!  Thanks for being a good sport Britt!

-Later that day, after Britt had wiped her forehead off, Brock, Britt, and I decided to go downstairs to get some lunch.  We got in the elevator and pushed the "1" button.  Just as the doors were shutting, I saw a lady trying to make the elevator in time, so I yelled to her and asked her if she was going down.  She said yes, and Britt, with her amazing ninja reflexes, did a high kick, with her injured, torn ACL knee, and stuck her leg in between the closing elevator doors, stopping them just in the nick of time for this lady to make our elevator.  It was awesome, we were so impressed, and we were all so tired, that we couldn't stop laughing, we were laughing so hard we were crying!! I bet this poor lady was sorry that she tried to make it in our elevator!  And then, when we reached the bottom floor, and were still laughing hysterically, Britt accidentally said, "Well it was better to catch it with me-leg, then with me-arm!"  Arghhhh, we spoke pirate for the next few hours!

-Abby and Brock trying to play BS with only 2 players.  Hmmmm, it didn't take them too long to figure out that it doesn't work!  Or the night they played egyptian ratscrew for almost 2 hours, it's one of those games that never ends!

-The night we took the camera with us and went on a walk.  This was the night that I realized that it really doesn't take much to amuse us, and that we probably think we are way funnier than most normal people do.  I will post some of our favorite pictures below, if you can't tell, in some of them, they are "spidermanning!"

The Good-

- I really do feel that we are nearing the end of our stay here.  Tomorrow is a big day, we get results from her picc line culture, white blood counts, CMV counts, immuno-suppresant levels, and she has an echo.  If we pass off on all of these things, we will be home Tuesday, if not.........ummmm, I'm not going there.

-The past 2 nights, I left Britt with Abby, and went to my brother's house, and slept in a bed, with sheets and blanket, and a mattress too!!!  Thanks Britt, I needed that.....a lot!  Thanks Jeff for letting stay there!

- Abby has been feeling pretty good, good enough that we can goof off and have fun!  Sometimes she doesn't even act sick :)  I really do think that she's getting better finally, and they've decided against the feeding tube!  Abby is eating just enough to squeak by without one!

-Our friends at PCMC.  We have been here at the hospital enough this past year that we have developed some pretty close relationships with many of the nurses, techs, and doctors.  They make our stay here so much better.  They have laughed with us, and cried with us, and been there to talk us through some tough times, or just frustrating times.  I know they follow Abby, and the other kids, and genuinely care for my family.  We will honestly miss some of them, but know they will keep in touch.  I have heard that they all want to be a part of Abby and the Doman family when we are here, and fight to get to be with us.  We have played games with them, joked with them, stolen their slushy room cards, invited them to hang out in our room, fed them (we always have treats in here), watched RAW wrestling with them, shared our ups and downs with them, and will really miss them.  We will come visit when we come up to clinic!!!  Thank you all for making it easier to be here :)

-My heart friends (both new and old!)-I was able to meet and spend time with so many people that are a part of the "heart" community.  We had so many visitors from people we hadn't met, but only talked to or shared stories with.  It was great to meet you and be able to put names with faces.  We also got to spend time with our transplant friends,we have missed you!!  Abby and I think that you are all heroes!!

-  We went to church, together, this morning at PCMC.  There's something special about attending church here, not that it's only 30 minutes, or that we get to wear sweats and pajamas, but the feeling, the spirit that is in that auditorium is awesome.  Add to that that's it's Easter, made it even more meaningful.  Taking the sacrament and hearing people speak on the atonement takes on an even deeper meaning when you're experiencing it at Primary Children's with people that are going through trials, probably the toughest trials of their lives, or are experiencing tremendous loss right now.  It's often said that there is a certain spirit in the halls of Primary Children's Hospitals, it was so strong and obvious this morning, that I felt grateful to be where we were today.  We weren't able to partake in any of our Easter traditions this year, but it didn't matter.  I was able to have my 3 kids sitting with me.  This hospital stay hasn't been easy, in fact, this past 8 months haven't been easy, but today, while we were sitting there together, I remembered how blessed I truly am.  I couldn't ask for anything more.  I hope your Easter was as sweet as ours, I know it's one that I'll never forget!!

Friday, April 6, 2012

How many needle pokes does it take to tick Abby off???

We have now been here 10 days.  You'd think that after 10 days, Abby's CMV levels would be looking better wouldn't you??  Well, they are down from 823 all the way to 768.  The problem is, they are supposed to be below 300, we aren't even close!!!   When you see Abby you think that she's doing okay, other than all of the weight that she's lost, but it seems like everything bad that can happen, has happened!! 

This is the story of the last couple of days:

On Wednesday morning, Abby found some gunk in her picc line-nothing too much, but it was there.  They decided just to change the covering and see what happened as the day went on.  That night, it was back, not thick enough to know that it was infected, but possible.  So, they decided to clean it again.  The nurse came down and spent about 45 minutes cleaning it up and making it look good. 

Then, even though it was about 8:00 at night, Dr. E. decided to stop by and check on Abby.  She heard about what happened, looked at it, and told them to pull the picc line, she didn't want to mess with it.  So, they pulled it out.  I felt bad for the nurse that spent so much time cleaning it up.  When I watched them pull the line, I almost puked, it's sick to think that it went all the way to her heart!!!  I had to take a picture. 
So, we the line was pulled and all cleaned up.  They had to take a culture to see if it was infected, so that was another poke (always 2 for Abby!)  Then they started an IV to give her fluids for the night.

The next morning was when the excitement began.  The IV team came to start another IV.  The only way that Abby could get her anti-viral med, was through an IV, they thought it would be okay, but were a little nervous to give it to her through the IV because it's so toxic, but they had no other choice.  So they got another IV in and started the meds.  About 25 minutes into it, it takes one hour to administer the whole dose, Abby said, "Um.......I think something is wrong with my IV!!!"  The nurse came in, and after looking at Abby's arm, hurried and stopped the IV.  It had leaked, or infiltrated, or gone bad, whatever you want to say.  It looked bad.  A big, red, hard swollen area all around the IV!  The wound team even came down to take a look! I think that was one of the few teams we hadn't dealt with here yet!  It was kind of funny, because Abby has a scar that's just a long line that goes right up her arm, it was right by where the IV was, so everyone thought that the wound was even worse than it was.  Well, problem solved, temporarily anyway.  She still had 30 minutes of her meds to go, so they put in another IV in the other hand, then sat and contemplated what to do.  The final decision was to dilute the med and have it run over a longer period of time.  The plan as of Wednesday night was to continue giving the anti-viral through the IV until it goes bad, or until we can put another picc line in, she still has 6 days of medication to go.

Things worked out all day Thursday, and then today, Britt and Brock got to come and be here with us!!!  We spent some time just hanging out, and then we heard some more bad news.  The culture from Abby's picc line came back positive, it was an infection.  So, how do we a treat it??  an antibiotic.  How do they like to administer the antibiotic??  Through a picc line because it's so strong.  Can Abby have a picc line?  No, because it was infected so they have to wait at least 3 days.  How long does she have to take it? 2 WEEKS!!!!  So, because they are already running her anti-viral through an IV, and they figured it's going be going bad at any moment, the IV team came in and put in another IV to start running the antibiotic.  It needs to run every 6 hours, so the chance of that IV lasting very long is pretty slim.  They are testing the picc line site again, and seeing how strong the infection is, we're hoping it's not too bad so she can get another picc line in to run all of this crap going in her.  When I asked the nurse if we can go home with the picc to run her antibiotic or if we'll have to stay here, she said, "sometimes you get to go home, sometimes you have to stay, it will be up to the cardiologists!"

Understatement of the year!!  hahaha-we are so funny!!
I don't know what we'll do if we have to stay, that will be too long.  It almost seems like things are getting worse, not better, and now we're scared for what tomorrow will bring.  I hate to say it, but all of this is getting a little old.
Hooray for Britt and Brock

The blood spray made a smiley face!!!

Love Abby's face!!!

2 IV's-couldn't be happier :)

Wednesday, April 4, 2012

Starting on week #2-booooo!!!

We are now beginning week 2 of our stay here at Primary's, I think I'm starting to get that glazed over look in my eyes, the "hospital eyes" that I've heard so much about.  The latest news is that we will be here at least until Tuesday.  Abby's body is not fighting the CMV, so they are going to reduce her immuno-suppression meds to enable her body to fight it.  This is scary because that leaves a bigger risk of rejection, which is Abby's biggest fear.  She absolutely does not want to have to go back on prednisone again!!!  They want to be able to monitor Abby while we're making these changes.  Her anti-viral medication is also a 2-week cycle, which means it will end on Tuesday, that's another reason we will just stay here.  They will do labs again on Friday or Saturday to check her CMV level and her white blood count, then another echo on Monday to see how her heart is doing.  If there are still no changes, we will try something different.  So, our earliest departure date is Tuesday. 

I do think that yesterday was Abby's best day.  They gave her some medication for her nausea, and it seemed to help her want to eat more.  Luckily, I think we avoided a feeding tube, but we haven't heard the final word on that yet, we'll know when the doctors come around.  I think that she ate and drank enough, now she'll just have to keep it up.  She was on a very strict calorie count yesterday, we had to write down everything-it reminded me of when we had to do that last May and I put Britt in charge of that.  If I remember right, her list looked something like this:  one bite of a grape, 2 cheerios, one spoonful of yogurt, one skittle, etc  She was very exact!!  We need her around again, we aren't nearly as precise, as you can see from her food list below.

As for what we've been doing, somehow, we are keeping busy!  We've loved our visits from our heart friends, it's awesome to meet so many new people!  At the bottom of the post, I included pictures of Brock and Abby's planking and owling adventure-yes, we were really bored!  We still love to play games, and we spend lots of time just chilling and chatting it up with our favorite nurses.  We go on walks every day, up and down the stairs many times to keep us strong, and across the walkway.  We go visit the redbox at the University Hospital everyday too, even though we know the movies will still be the same.

Britt and Brock are learning how to live on their own.  Thanks to our neighbors that have brought them dinner, I appreciate that a bunch, it makes me feel like I'm not neglecting them quite so much.  It's times like these that I wish there were 2 of me, or even 3, then I could be at school too, I feel bad that I've left my classes for so long again, but I know they are in good hands with my substitute and the other teachers.  Thanks to everyone at Sunrise Ridge for helping me out again, I know that it's probably getting old.  Britt and Brock will both be coming up on Friday and staying with us until Sunday, I can't wait, it will be so nice to have them here, and we can all be toghether for a couple of days!!  I keep forgetting it's Easter on Sunday, but we did hear the Easter bunny will be visiting-wow, Abby is looking forward to that :)  And one of our favorite techs, Camilla, is planning an Easter egg hunt for us on Thursday too!!!  You know, it's the little things that matter!! 

We are doing okay, we are hanging in there.  This isn't where we want to be right now, but I can understand why they want us here.  CMV is a bit like mono, it can take a long time to fight and get rid of, but we are on our way to getting over it.  Thanks for your continued thoughts and prayers, they do strengthen us and make things easier.

I love hoe Abby sleeps with her phone in her hand!

I thought that someone stole my idea when I saw this sign, but they didn't!! When I get rich,  "My Spa for Hospitals and Healing-SHH" idea can still happen :)  It's a traveling spa for people that have to stay in the hospital, haircuts, pedicures and manicures, massages, etc.  I could make millions for sure!

Who's idea was this??

An "owling" attempt!

Double planking by Abby and Brock!

Abby wanted me to label this one as "Brock's failed attempt at planking!"

Another failed attempt!

Now here's what planking should look like!!  Nice  plank Abbs!

Another fail, but gutsy move in the coffee shack!

Abby's menu yesterday, good enough for no feeding tube??  I hope so, we're still waiting to hear!

Monopoly score, yes, I let her win sometimes :)
Jill-you're famous now too!!

I found the snack drawers!  I'm probably the only one that's ever raided the fig newton drawer!!  I love those things!

Abby keeping up with her homework-mean mom!!!