Thursday, November 24, 2011

I have never been so thankful!!!

I've been debating whether or not to do a post all day, I've expressed what I'm thankul for many times in this blog; but, I have to do it, I am just too thankful today not to.

I am thankful.........

That our scare at clinic on Monday turned out to be nothing.  Abby's pulse has been really high lately, then Dr. Tawny heard a gallop while listening to heart and he also saw a slight change in her, we had to schedule another last minute biopsy.  On Monday, my gut instinct was telling me that Abby was still in mild rejection and that we would be spending the week at PCMC;  But, on Tuesday, the biopsy came back clear!!  For the first time through all of this, my instinct was wrong....and I am thankful for that!  Although we had to spend an extra day in Salt Lake, it's okay, I would always rather play it on the safe side when it comes to Abby's heart.  This leads me to the next thing I'm thankful for...

Abby's doctors and the transplant team.  I'm thankful that they're thorough and that I can always trust them with Abby, I know that they'll do whatever it takes to take care of Abby.  I trust them completely.  I'm also thankful that when they walk in the room, I know that they care for us, not just as doctors/patients, but as friends too. 

for all of our new "heart" friends.  Wow, we are so lucky to have other people that understand, that know just what we are going through and how we are feeling.  I love being able to talk through things with you and to know that you "get it."  Thank you for reassuring me, talking me through the hard times, validating my feelings, and making me feel normal.  There are many of you that I haven't even met, but I still know you're there and that you care about us, and I hope that someday I can meet you and thank you personally and give you a big hug!  I don't know where we would be without all of you. 

for all of you, our blog followers.    I don't think you realize how much strength it gives me when I read all the blog comments, all the facebook messages, the emails, the texts, and the phone calls.  Just knowing you're out there and that you still care about us is the most empowering thing.  I'm shocked we still have so many followers, but I'm so thankful that we do!  Thank you for sticking with us and for realizing that we are still in the heart of this trial we're going through, it's nowhere near being over.

that I know that if we can just hang in there a little longer, things will get easier and easier.  We are still in that crucial time, it's only been 4 months since the transplant! 

for Abby's donor family for making the decision that saved Abby's life.  I wish I knew who they were, especially today, so that I could thank them for that decision and show them how amazing Abby is.  I just think that this would bring them comfort.  I still pray that someday, when the time is right, we will meet them.

For my kids-Britt, Brock and Abby.  Everything about them is incredible.  Even going through the past 6 months they've held strong and never lost sight of who they are.  I'm always proud of them and often look to them as my example.  I love how they are so protective of each other and would do anything to support each other.  Being around them and watching them interact just makes people smile!  They are perfect to me.

I am mostly thankful that we were home-all of us, this Thanksgiving.  It's so hard to believe that only 6 months ago we were sitting up at Primary Chilren's Hospital listing Abby for a new heart, and look where we are now.....who would've thought that we'd be home, together by Thanksgiving??

I am thankful today......just so incredibly thankful.

*Now if I can just get motivated to get out our Christmas stuff and get the tree up!  Usually it's done by Thanksgiving,  but I feel like we just got everything put away and I'm not sure I want to create another mess that eventually I'm going to have to put away!!!   Maybe tomorrow, or Saturday, or maybe next week, or the week after..........

Sunday, November 20, 2011

Maybe it's okay.........

First of all, Brock's game was the best.  Even though they weren't able to win and pull off the upset, it was still an amazing experience.  Not only was he playing under the lights at Rice Eccles, but he was playing in a major blizzard....the flakes were as big as snowballs!  It will be a night we will always remember, and luckily he's still got two more years to play there for the state championship.  I hope his coaches realize how much he looks up to them and respects them, they've had a huge impact on his life.  Even though he's feeling totally beat up and sore right now, he's still always so sad when the season ends and football is over.  To be honest with you, it makes me a little sad too! 

We spent the whole weekend here in Salt Lake, and we haven't done that since we moved back home. Being here for a longer period of time made me realize something, something that I probably should have realized sooner, but it really hit me this weekend.......the last 6 months of my life have been hard, really, really, hard- we went through a major trauma.  Not only did we deal with Abby nearly dying at school on May 18th, but then we also had to move with short notice-no notice really, we spent the majority of our summer at PCMC, I had to leave Brittany and Brock in St. George and live away from them, Abby went through a major surgery, we had to learn to accept that someone had to lose their life in order to save Abby, I had to leave my job for 3 months, and now our lives are filled with trips to Salt Lake, medications, biopsies, migraines, etc. etc.  It's been hard.  Any one of these things, even all alone, would have been a trauma, but we've gotten to experience all of them, and in only a 6-month period.  Realizing this made me also realize that maybe it's okay that we're not back to 100% yet, it's really okay.

I think that my expectations for myself have been too high.  Maybe it's okay if I'm still struggling.... a lot, maybe it's okay if I still can't go into the school gym without falling part, maybe it's okay if I'm completely exhausted every night, maybe it's okay that I just need a little more time to recover and figure out this new life.  We've been through a lot, and we're still going through it, so maybe I shouldn't expect myself to be right back where I was before, maybe that's okay.

And maybe everyone else doesn't expect me to be either.  I've been trying so hard to make everyone believe that we are "okay" because I thought that they expected me to be by now, it has been 6 months....but, maybe people don't expect me to "be" anything!  Maybe I've been working so hard to make everyone believe I was okay, when really they were thinking, "How can they possibly be 'okay' after everything they've been through?" who have I been trying to fool, and why????

Maybe it's okay that I haven't gotten everything figured out at school yet or learned all of my students' names,  maybe it's okay that I haven't been able to get back to my 5 AM workouts, maybe it's okay if I still completely stress out every time Abby has clinic or takes her blood pressure or has a fast pulse, maybe it's okay if I still worry when I drop her off with her friends and I still can't leave her home alone, and maybe it's okay that when I hear sirens or see someone doing CPR on TV that it freaks me out a little's really okay.

Maybe it's okay if I'm not exactly the same Michelle that I was before, maybe it's even better now.  Maybe I can now be more understanding of other peoples' struggles and I have lots more compassion.  Maybe now I value my relationships with other people more than I ever have before and I take them more seriously than I used to,  I just know the difference a good friend and having someone to trust can make.   Maybe I don't laugh quite as often as I used to, but that doesn't mean I'm not as fun, things are just still a little heavier still, and that's okay. 

I just think I've been a little too hard on myself and it's time to give myself a break.  Maybe I'm wrong and these things really aren't okay..... maybe other people think it's time for me to get over it and move on and get back to normal, but I realized this weekend that I can't yet and I don't think I should have to.  We've been through a lot, and now I know that it's okay if I'm not completely okay.

Tuesday, November 15, 2011

Headache free for Abby and good things happening with Britt and Brock!!!

Just a quick update on a few things:

First, and most important, Abby has gone 2 nights in a row without having any migraines!!   For the past couple of weeks, last week being the worst, Abby had a migraine headache every night!  She would come in my room and tell me it had started, once this happened, nothing helped to make it better.  They were so bad that she couldn't lay down or even sit down without it being too painful.  Because of all of her other meds, we could only give her Tylenol and this wouldn't even touch them!  Sunday morning was the worst.  Abby came in at 3:00 AM, crying and saying that this was the worst one ever!  She said her eyes kept blacking out and they felt really swollen and that her hands and arms felt numb.  I immediately took her blood pressure and it was a whopping 165/125.  I decided it was time to call the transplant team.  They had me give her one of blood pressure meds that we had switched from a couple of weeks ago.  Right after Abby swallowed it, she started throwing up, but I was just hoping that she kept at least a little bit down.  We continued to watch her blood pressure, gave her another dose of Tylenol, and just prayed that it would get better.  Abby did not want to go into the emergency room to get some IV pain,meds, she said she'd rather suffer through it then go to the hospital.  So, as her mom, I felt completely helpless.  There was nothing I could do to make her feel better and this was hard....really hard.  Trying to help her through these migraines was one of the hardest things I've gone through so far because I couldn't do anything to ease her pain.  Not only that, but we were also living on only about 4 hours of sleep each night, and one thing I've learned through the past 5 months is that everything appears so much worse when you're tired.  Thankfully, Abby's migraine turned into just a headache, but it lasted through the entire day.  The poor kid couldn't even sit down and relax the whole day, but she still wouldn't go into the emergency room.  By about 7:00 Sunday night, I had just about reached my breaking point.  I was thinking that this was the thing that was finally going to put me over the edge.  I knew that I wouldn't be able to go teach school Monday without getting some had just been too many nights in a row.  I knew that Abby couldn't continue to live with this nightly pain and no sleep, it was too hard.  At this point, Abby said that maybe it was time she got a priesthood blessing.  I don't know why I hadn't thought about this sooner, my brain has just been to messed up to think clearly.  One of my good friends suggested a neighbor right down the street and luckily he was willing and able to come and give Abby a blessing.  That night was the first night in 2 weeks that Abby hadn't been awake with a headache.  She slept 13 hours without waking up once!  This means that I also got a good night sleep.  Monday night, the same thing, no headaches!  We've now made some medication changes which hopefully have helped to stop these migraines forever!!  There have been so many times through all of this that I've thought that I just can't take anymore, that I've really reached my max......but every single time, right when I'm teetering on that edge, things start to turn around and we get through it.  The thing that I wish I could understand is why do I  keep getting pushed right to that edge??  It just seems like maybe it's our turn to have things settle down a little bit, and for longer than just a day or two.  Why did this have to happen last week when it was also my first week back to teaching??   Why couldn't it have happened before I had to go back?   Why should Abby have to deal with any more pain?  Hasn't her poor body been through enough already?  It just seems to me like it's our turn to catch a break and to just have it easy for while.  I hate to complain, and I do know that there is a purpose for everything,  there is a  reason that we are going through these things, and some day I will know what that purpose is, but is it ever okay to just say, "Enough already!"  I hope so, because right now that's how I feel. on a lighter, more positive note, there are some good things happening around the Doman house.  I'm so proud of Britt.  After spending so much time in the hospital this summer, she made the decision that she's going to be a nurse.  This past week, she started volunteering in the emergency room!  She also signed up to get her CNA next semester so that after she graduates in May, she can get a "real" job while she's going to college to get her nursing degree.  It's exciting for me to see Britt finding the direction she wants her life to go in.  She will make a good nurse, I've already seen her nursing skills firsthand, she always takes perfect care of Abby.  I'm also proud of Brock!  As a sophmore, he's playing in a state championship football game this week at Rice Eccles Stadium.  Brock knows how to work hard and to be dedicated, this is really starting to pay off.  I can't wait to watch him run out of the tunnel at the University of Utah...I know that this is something that he's dreamed of his whole life!  I have the greatest kids in the world, I am grateful every day that they are who they are!!

I'll finish up with something that's a little scary for me.  Abby is going back to school on Friday.  This makes me nervous enough, not just because of all of the germs and sicknesses around, but remember what happened the last time she went to school on May 18th????  Here's something else that's a little freaky, the date on Friday is November 18th......hmmmmm, exactly 6 months since the last time she went to school, May 18th, when this whole ordeal began.  No matter how rational I try to be- trying to tell myself that I know that she will be okay, and that the date doesn't matter, and that she's just going to school and that I will be there too, and that it doesn't make sense to worry about it.....I still get really nervous even thinking about it.  Friday could be a tough day.  My head is telling me one thing, but my heart is telling me another.  But, it's just another thing that we will get through, another step we will take.  It might appear that we're just going over these little hurdles along the way, but when we step back a little, it's obvious to see that we've really come a long way.  Thanks for sticking with us and continuing to read our story!

Thursday, November 10, 2011

A post from Abby :D

Hey everyone! It's Abby. :) This is my second blog post since this has all started... As you know a couple weeks ago we were still in rejection, that means the Prednszone taper started over. That means big cheeks, achy legs, and worst of all- No school :( November 7th was going to be the day!!  But, my heart had other plans. So, the second trimester started without me again. We are kind of breaking the doctors rules:) I went to one class period today! Journalism. I need to be there for two reasons.
    1. I want to work on the yearbook. I think it will be fun! And if I'm behind I will have no idea what they are doing. Not good.
    2. I miss my friends. A lot. It's hard being on house arrest all the time... I need my friends! And the people aren't sure how to act around me still so this will be good to show them I'm just normal:)

It was a great day today. I got ALL my work done in school! Well, for one week anyway. I will probably go about two or three days a week and just get it done then. I sit in a classroom playing soft music and work. All day. It's great. :) Good news- November 19th is when I can go back! Which is weird becuase, well, thats a Saturday... Those tricky doctors! So that Friday I will go (I will still have to wear my mask until flu seasons over... But that's okay) then that next Monday we have clinic at Primary Children's again. Great. Then Tuesday I will go to school, then it's Thanksgiving break! They think they're so smart, which they are, I get one day of school before Thanksgiving! 

So we don't have to go to Salt Lake for two weeks!  Brocks semi-final football game WAS going to be up there, but the people in charge changed it to Dixie State! BEST. NEWS. EVER. No eight hour drive in one day!! Clinic last Monday went well. We drove up that morning at about 4:00 a.m. (I slept the whole way!) and got there exactly at 9. My mom's the bomb at being on time. She's NEVER late! We went in and talked to our secretary friends in the cardiology department, got my blood drawn ( Have to use the hands.. Arms are too worn out!) They got it on their first try! Almost every time since my new heart they've gotten it first try, I love this heart! After getting my sparkly bandaid we walked back into the cardiology department to wait for the echo people to come get me. They took my blood pressure, pulse, temperature, weight, height, all that jazz then got to go in our favorite room that we somehow ALWAYS get stuck in- The fetal echo room. We usually like it in here, its got a nice couch and carpet! A new lady did my echo this time.. She pushed really hard on my ribs and it hurt. ( They are still tender from surgery) They also did my neck which they have never done before. ??? Oh well, I watch Tangled and quoted every word. :) My mom hates it when I do that. Maya, my heart friend was there, we didn't talk much,  but we do know they might have to get another ablation surgery.. Please pray for their family!  We went back into our little room and I colored on they back of the little papers they have there for little kids to color on. Sometimes I write stories about tacos and stuff.. :) I get bored! The docs came in, listened to my heart, and sent us home! It went by so fast it seemed like we forgot something, but we didn't. I hate that feeling. We have to go in to Dixie Regional on Monday to get lab work but thats all:) NBD.

Some bad news-- Headaches. Ouch! I've been getting REALLY bad headaches this week. Migraines even. I can't take most pain meds because of all of my other meds, so, only Tylenol. Yeah  I know, not good. One night it lasted from about 11 at night to 1 in the morning. It's even worse because you can't do anything about it! We've tried EVERYTHING: Tylenol, warm blankets, heating pad on my head, natural oils, no sound, no lights, sitting down, standing up, wash cloth on the face, and more. Only when we were desperate to do ALL of those things did it help enough for me to fall asleep until morning. One of my mom's friends brought over these oils that I think helped. Last night I didn't get one!! Yay! So hopefully I won't have any more. The doctors have no idea what it is... It might just be from the Prednisone taper, MiaBella's family said she has to go down a quater pill a time or she gets headaches... The tapers already slow, only 1/2 a pill a day, I can't imagine it being slower!
Well, after we get these headaches figured out everything will be great:)

 I'm glad I get to go to school and act like a normal kid again! It will be hard when I have to go back full time but I'll get used to it. Hanging out with Grandma and Grandpa is great(: But I like kids my age too.... I'm thankful for everything you guys are doing!! We have Team Doman wristbands we are going to sell when I get back to school. $1! We have tons.

Monday, November 7, 2011


Fortunately, I woke up at 3:30 AM and couldn't go back to sleep.  So I decided we should just get up and get an even earlier start on the day.  I even thought maybe we could get in and out of clinic really fast and get back to St. George early!

Unfortunately, there was snow and a blizzard from 10 miles before Cedar City all the way to Nephi.  So we didn't get to clinic early.  The drive was horrible, I white-knuckled it the whole way.  I'll even admit that for a minute, only a minute, I thought to myself, "Maybe I can't do this.  I don't know if I can wake up at 3:00, drive for 5 hours in snow,  be tense at clinic and waiting for what the transplant team has to say, then hop in the car and drive back in snow again, and then try to wake up tomorrow and teach school all day."  The doubts were flying!

Fortunately, we pulled in the parking lot of Primary Children's right when my car clock turned to 9:00-exactly on time for our appointment.  My thoughts quickly turned to, "We are freaking amazing!  Snow, blizzards, traffic, 300 miles...... and we still make it exactly on time!" I couldn't stop bragging, I definitely felt amazing.

Unfortunately, I really was the only one that thought it was THAT amazing.

Fortunately, clinic went well.  Abby's echo looked awesome.  We are going to continue on the prednisone taper and hope that the rejection has cleared up.  She hasn't had as much swelling in her arms and legs this week since she started on her new blood pressure medication, and her pulse has also gone back to normal.

Unfortunately, Abby has been having some horrible headaches this past week.....possibly migraines even.  She didn't have headaches before the transplant, but has just started them this past week.  She said to think of your very worst headache and times it by 4 and it will almost be how bad her headaches are. She's been pretty miserable.

Fortunately, we talked with the transplant team about many possible reasons and decided that her prograff level was probably too high, and when we got the results later in the day, we would just adjust her tacro med (anti-rejection medication) and her headaches would be gone.

Unfortunately, her prograff level actually came back too that isn't it.  We are going to try some other things now.  Possibly it's the large steroid dose, or maybe she's becoming too dehydrated.  We'll figure it out.

Fortunately, we don't have to go back to clinic next Monday.......we have a week off!  We just have to make a trip to Dixie Regional on Monday to get another Prograff level.

Unfortuantely, we have to go to Salt Lake again this week anyway because Brock's football team, Desert Hills High, is playing in the semi-finals at Rice Eccles Stadium Friday night at 6:30.

Fortuantely, I love watching Brock play football!!

Unfortunately, Britt has to be back for her Sadie's date at 9:00 on Saturday morning.  So that means we'll be having another very early morning drive, this time on Satuday morning.

Fortunately, while I was typing this, Britt told me that there's a spirit bus and she can ride it to the game and back!!! 

Unfortunately, Britt won't let Abby and I be chaperones and catch a free ride up to Salt Lake and back!

Fortunately, Abby is doing better, she's going to be able to go to school as soon as she come down more on her steroids, and we don't think she is in rejection any more!! And I kept running into this quote throughout the week, so I decided I better include it in the blog.  There was a reason it kept popping up to me, I needed to be reminded.

“No pain that we suffer, no trial that we experience is wasted. It ministers to our education, to the development of such qualities as patience, faith, fortitude and humility. All that we suffer and all that we endure, especially when we endure it patiently, builds up our characters, purifies our hearts, expands our souls, and makes us more tender and charitable, more worthy to be called the children of God . . . and it is through sorrow and suffering, toil and tribulation, that we gain the education that we come here to acquire and which will make us more like our Father and Mother in heaven.”
Orson F. Whitney