Monday, November 26, 2012

Clinic Monday and my dad's quadruple bypass surgery

     I'm not quite sure where to start with this post, but I think I'll go backwards chronologically.  That means that I'll start with clinic today.  With everything else that's been going on lately, I wasn't even worried about clinic, I knew things would look good, and I was right!  Abby has been feeling really good the last few days! She was so active with her cousins all weekend, running, playing on the tramp, going to the park, playing hopscotch and jumprope, and guess what????? NO SWELLING!!! none, at all, well okay, maybe just a little, but nothing too serious!  I think the transplant team was as excited about this as we were!   Abby gets to go off of 3 meds today and will be off of steroids and Valcyte on Saturday.  Making these changes always worries me, Abby doesn't like to come off of meds, for some reason her body does weird things whenever we make changes, but not this time, it's not allowed.  Going off of 5 meds sure makes my job as pharmacist much easier.  My only worry at clinic was that the past few echos have shown some thickening in her heart, for now we're blaming the steroids for this.  But, the thing that worries me the most is that it started before she was on steroids, that's one reason we knew she was in rejection.  I just keep trying to tell myself that if Dr. E wasn't worried, then I shouldn't be either.  I'm pretty sure she knows a little more about the heart than I do :)  If her next echo, on the 27th, doesn't look better, then I'll know it's time to really worry.  One really good thing about clinic today is that we got to see so many of our heart friends, and that made everything even better, and I really needed that today (more about that in the next paragraph).  I even got to discuss colors and their opposites with the amazing Matthew and his mom Chrissy, touch base with Shauntelle and Kaidence (who we miss so, so much), and have a very brief chat with both Hilary and Aubrie and their cute babes, what more could you ask for in a clinic visit?  Then, to top it all off, we very, very briefly stopped by the Festival of Trees to check out the tree and to see some of our other favorite heart mamas!  It was just the boost I needed to motivate me to get back in the car and start driving.  We sure love all of you that we've met this past year and a half, you mean the world to us!

     Now I'm going to go backward to Saturday, and Sunday of last week.  Because I didn't have enough on my plate right now, my dad decided he needed to be included in my troubles too.  Before I continue, let me tell you a little bit about my dad.  He's probably the coolest 70-year-old I know.  Just last month he retired, he's been working as an emergency room physician forever.  He worked his last shift the beginning of November.  My dad also held the record for the fastest mile run at the University of Utah for many years, he ran track there and went to medical school there too.  That's probably the beginning of us being extreme Ute fans.  He's run in multiple marathons since then, his fastest one was around 2:37.  He runs or bikes every day and always has for as long I remember.  He just recently started mountain biking again.  Like I said, a pretty cool 70-year-old, definitely not your typical one.  He's been Abby's biggest ally this past year and a half.  He's spent so many days with us at PCMC and in our Sugarhouse house too.  He always knows when Abby needs a shopping day to cheer her up too!  He's just always been there for her.

     Anyway, last Saturday morning, after running and biking, he told us he was going to the emergency room to get an x-ray to see if he broke a rib when we he crashed mountain biking the day before.  But, really, he knew that he was having a heart attack and just didn't want any of us to worry until he knew how serious it was.  Then we got the phone call that he was being admitted and they would be doing a heart cath the next morning to see exactly how bad his heart really was.  It's a good thing I'm an expert on heart cath's and everything cardio now, I felt like such a pro.  The cath was Sunday morning.  I can't believe he stayed awake the whole time they were doing it, he refused to go to sleep.  He watched them do it, and probably told them what to do as well!  The cath told us that it was pretty bad and that he would be needing surgery to repair all of the blockages.  They thought at that time that it would be a triple bypass.  We weren't sure when the surgery would be scheduled until they talked to the surgeon later that day, so Abby and I hopped in the car and drove to Salt Lake for clinic.  I was hoping the surgery would be on Tuesday morning so we'd be back, but they ended up doing it this morning, right while we were at clinic.   My sister had to work and my brothers both live in Salt Lake, so since I was gone, that left Britt to go sit with my mom during the 4-hour surgery.  Thanks Britt, you're my hero!  Britt worked the night shift from 6-6 the night before then went right to the hospital and stayed with my mom until the surgery was over.  What a great kid, I love you Britt!  The surgery ended up being a quadruple bypass, it was pretty bad.  I feel like we're lucky he didn't have his heart attack while he was out running in the desert that morning, or that it wasn't a more serious heart attack.  It was hard being in Salt Lake while he was in surgery, but that's how it goes.  It kept me busy.  The transplant team probably thought I was a little distracted, but I did okay.  I didn't tell any of them what was going on because I didn't dare start talking about it,  I didn't know how my emotions would hold up, so I just pretended it wasn't happening.  The surgery went well, he's now recovering in the ICU and  we are going to go visit him very soon.  Abby is excited because she said they can do cardiac rehab together and they can compare scars and meds.  I'm not excited because he has a 2-month recovery, probably even longer, and keeping my dad down during that time will be hard.  At least he'll be there and can recover with Britt and Brock after their upcoming surgeries!

     So, the thing I was trying to figure out on my drive home today was why all of these things keep happening.  Haven't I had enough yet?  Is it my fault because in my last post I had finally accepted everything that was happening and I even said, "Whatever, bring it on, we can do it?"  Am I supposed to crumble in a ball and fall apart and not be okay and then things will stop?  Is that how it works?  Some people have said that I chose these trials before I came to earth, but honestly, I don't think I'm that stupid.  Or else, I probably didn't understand how time works here on earth when I volunteered.  There's no way that I chose for Britt to have 3 knee surgeries, Brock to have ankle surgery, everything that goes along with Abby's heart transplant, Britt to have her tonsils out, and my dad to have a quadruple heart bypass, all within a 2-year period, nobody is that stupid.  Then there's the people that keep saying, "You're only given what you can handle."  But, what does handle mean exactly?  I think it means you survive, and that's all.  For the people that keep telling me that I'm so strong.  I'm not, really.  I'm probably the most tender-hearted person I know.  I cry when someone else is crying, even if I don't know them.  I hate to burst your bubble, but I'm not strong.  I started thinking that maybe there's some lesson I'm supposed to be learning but that I've been too stressed out to see it, or maybe I'm doing something wrong and I'm just missing it.  There's got to be some reason, or maybe not.  But, it seems like maybe I'm missing something.  If any of you can help me figure this out, I'd appreciate any advice I can get.

     For now, we'll just keep on keeping on.  Brock is scheduled next Wednesday for his ankle surgery.  Britt is scheduled the week after that, on the 13th for her tonsillectomy.  Hopefully, they'll both be feeling better by Christmas, and my dad too.  Abby goes back to clinic on the 27th.  This will definitely be a Christmas to remember!  I'm taking back my comment about bring it on, we can do it.  We're done.  I'm not accepting any more trials this year, I reached my quota long ago.


Wednesday, November 21, 2012

Doman family medical update and gratitude

     Yep, I named this post the "Doman family medical update and gratitude"  It's sad, I know, but that's what we're dealing with for the next month, lots of medical stuff.  So here goes......

     Abby-  Abby is finally feeling better!  She hasn't had a sore throat for a couple of weeks now and I think we've finally figured out to treat her GI issues!  She's still on the steroids, but she's at the bottom of the taper, so hopefully, she's almost done!  She worries about her cheeks and the weight gain they cause, but she also understands that they're a necessity to treat rejection.  Her only problems right now are that she's still feeling a lot of fatigue, she still gets occasional swelling in her legs and feet, and she's having intense headaches in the evening whenever she stands up.  I'm hoping the headaches and fatigue are just from her coming off of the steroids. We decided the swelling is just something that she'll have to deal with.  We go back to clinic on Monday.  We're hoping that everything looks good and we won't have to go back up for at least a month.  I think they'll take her off of a couple of her meds again too, one of them is Valcyte which prevents CMV.  Abby just better not get CMV again when she goes off of it, I let her know that this is not an option :)  It's nice to see Abby feeling better and to know that we'll for sure be home for Thanksgiving.  Last year, she had a surprise echo the Tuesday before Thanksgiving so we were worried we wouldn't be able to come home.  But, this year, unless something really weird happens we will be here!!  Yahoo!

     Brock-  Good news here, lots of good news.  We went to Brock's pre-op appointment last week.  He is scheduled for December 5th.  The good news is that he will only need surgery on his left ankle, the right ankle injury from the game a couple of weeks ago should eventually heal on it's own, hopefully he'll be able to walk on it again before December 5th because he won't be able to put any weight on his left ankle for 6 weeks after his surgery.  The other good news is that when Dr. Leitze first saw the MRI, he thought that he would have to cut into Brock's ankle to fix it, but after he researched it, he decided that that's not the case, it can be an arthroscopic surgery.  He just had to order some unique, special tools that should be able to reach the OCD lesion and fix it.  There is an 80-90% success rate with this kind of surgery......Brock just better not be in the other 10-20%, I've also warned him that this is not an option either :)  After 5-6 weeks he'll be able to walk on it again, and then we'll start physical therapy.  We're hoping by March he'll be able to start running again and start preparing for the next football season!  5 weeks on crutches is going to be horrible for Brock (and the rest of us) but he'll just have to tough it out.  Maybe he'll even be throwing the shotput this year too, he would be great at that!
     I was proud of Brock this week when he was awarded the Desert Hills High School lineman of the year award.  Brock was excited and felt honored to win that award.  It wasn't an easy award to get, There's a bunch of good lineman on the team, so it was especially great.  Brock's lucky because not only does he have the heart and drive to be a good football player, but he was blessed with physical attributes as well.  You see Brock and you think, football player, he's one lucky kid, but he works his guts out every day as well....both during the season and during the off season.  He works hard and is extremely driven.  He's already missing playing basketball this year, he's been playing since he was 4-years-old, but we have to get his ankle fixed, there was no way he could play on it again this year.  Maybe next year he'll be able to play again.  We're hoping for an easy, successful surgery.

I'm such a lucky mom!

Brock and Coach Franke-Brock loves all of his coaches.  He looks up to them and I love that they are all such great examples for him.  He knows that they are always watching out for him and will do anything for him.

Britt- Britt is getting her tonsils out on December 13th.  I've had a lot of people ask me why she's getting them out right now while things are so crazy for us.  Believe me, it's not a choice, we really don't want to do it.  In September Britt got an abscess on one of her tonsils that almost needed to be removed surgically.  The ENT told us then that Britt needed her tonsils out ASAP.  Unfortunately, Britt is also in college and can't just miss class, especially with all of the credits she's taking.  She also needs to maintain a high GPA to keep her scholarship.  Her Christmas break begins the week of December 13th, so that's when we have to do it.  She really doesn't want to get her tonsils out either.  The doctor looked right at her and told her to plan on at least 2 weeks of moderate to severe pain, it's not going to be easy.  Britt doesn't wake up from anesthesia well either, it's not going to be fun, but it has to be done.  At least we know that this is a one-time thing, once they're out, they're out forever!  She'll be okay, I don't think it's going to be as bad as she thinks.  Hopefully, she'll be feeling better by Christmas.

Me- Physically, I feel great.  I don't need any surgery, and I never get sick.  My only problem is that I keep getting big knots in my shoulders and neck, but that's nothing a little massage here and there won't cure.  I know that I carry my stress in my shoulder/neck area, and the massage technicians always love to inform me of that as well.  If there's anything I do need, it's probably a  psychiatric evaluation!  No, I'm just kidding, I'm actually pretty good right now.  I felt sorry for myself for a while, then I got mad, but now I just shrug my shoulder and say, "Whatever, bring it on, we can do it!"   I am not currently winning the weight loss battle though.  I'm just maintaining, and that might have to be okay for a little while.  Losing weight is hard enough when you don't have a bunch of other things to stress about, trying to lose at stressful times is almost impossible for me.  Abby and I decided that we're going to start running and try to work our way up to running a 5k.  It should be fun to get in shape together.

     We, as a family, have a lot to be grateful for this Thanksgiving.  Even though it's been harder to remember those things lately, I know they're there.  I'm grateful that we get to be home together almost this whole break and we don't have anything scheduled until Sunday when Abby and I have to go back to Salt Lake for clinic. We need some down time.  I'm so grateful for my friends that I work with at school.  I can't tell you how many times they've had to cover for me when I've been stuck in Salt Lake or had to leave in a hurry.  They make my job so much better.  I'm thankful for my job.  I love teaching school this year.  My classes are incredible and I love teaching them, it's really fun, in fact, I have a blast teaching.  I love it.  I'm grateful for our house and the neighborhood we live in.  I love where we live, and we are surrounded by great people.  I know they are always willing to step in and help out whenever we need them.  I'm grateful that my family all lives here in St. George or in Salt Lake and that we get to spend time with them often.  We probably take this for granted, but I know a lot of people that aren't able to spend time with their family this Thanksgiving,  and that would be hard.  I'm so, so incredibly thankful for my "heart family."  They completely understand what I'm going through and know what to say and do, they know just what I need to hear.  They can relate to my ups and downs because they've been there too.  I'm always thankful for them.   I'm always thankful for Abby's transplant team and all they've done for our Abby as well as my family.  I know that I can always rely on them to do what's best for Abby and her continued care.  It makes me feel better knowing that I can always trust what they do.  Especially this time of year, but really always, I'm grateful for Abby's donor and their family.  I think of them often, almost daily.  Without their selfless decision, Abby wouldn't be here with us, and that's something that I'll never forget.  I will never forget how grateful I am for them, they're always close to my heart.  At the top of my thankful list is always my 3 kids.  Even when they're trying to push me to my max, like they are this month, I'm still so thankful. I think I'm the luckiest mom alive!

     A few weeks ago, when I was having such a hard time and feeling so sorry for myself, a good friend sent me this quote.  It helped me get out of my funk.  I told her that I would post it on my next blog for any of you that hadn't heard it before.  She told me to just insert "Child with a life-threatening disease" instead of a "Child with Cancer."

By Erma Bombeck 

Most women become mothers by accident, some by choice, a few by social pressures, and a couple by habit. 
Did you ever wonder how mothers of children with life threatening illnesses are chosen? 

Somehow, I visualize God hovering over Earth selecting His instruments for propagation with great care and deliberation. 
As He observes, He instructs His angels to make notes in a giant ledger. 
"Armstrong, Beth, son, patron saint Matthew. Forrest, Marjorie, daughter, patron saint Cecilia. Rutledge, Carrie, twins, patron saint Gerard." 

Finally, He passes a name to an angel and says, "Give her a child with cancer." 
The angel is curious. "Why this one God? She's so happy." 

"Exactly" smiles God, "Could I give a child with cancer a mother who does not know laughter? That would be cruel." 

"But, does she have patience?" asks the angel. 

"I don't want her to have too much patience or she will drown in a sea of self-pity and despair. 
Once the shock and resentment wears off, she will handle it." 

"I watched her today. She has that feeling of self and independence that is so rare and so necessary in a mother. You see, the child I'm going to give her has it's own world. She has to make it live in her world and that's not going to be easy." 

"But, Lord, I don't think she believes in you." No matter, I can fix that. This one is perfect. She has just enough selfishness." 
The angel gasps -"Selfishness? is that a virtue?" 

God nods. "If she can't separate herself from the child occasionally, she'll never survive. Yes, here is a woman whom I will bless with a child less than perfect. She doesn't realize it yet, but she is to be envied. She will never take anything her child does for granted. She will never consider a single step ordinary. I will permit her to see clearly the things I see...ignorance, cruelty, prejudice...and allow her to rise above them." She will never be alone. I will be at her side every minute of every day of her life, because she is doing My work as surely as if she is here by My side." 

"And what about her patron Saint?" asks the angel. His pen poised in mid-air. God smiles, "A mirror will suffice."

I hope you all have a wonderful Thanksgiving this year.  Thank you all for your continued thoughts and prayers for my family.

Sunday, November 11, 2012

".......and not to yield!"

     What a weekend.  I can't believe everything that's happened in even just a few days.  We'll start with talking about Brock's football game.  We were lucky enough to be able to go watch Brock play in the semi-finals at Rice Eccles last Thursday.  Brock was so excited to play there, he loves that place!  Even though Desert Hills lost, the game was still fun.  We were winning the whole first half, then just made some mistakes, and we just couldn't get going again.  As hard as it is to lose, the team far surpassed what most people thought they would do this year, they played their guts out, and just getting to play at Rice Eccles is always the goal.  I thought that Brock was amazing, but since I'm his mom, I might be a little biased.  The bad thing about the game was that with about 5 minutes left in the game, Brock got hurt.  I saw him go down and have a hard time standing back up, I could tell it was his ankle, his good ankle, the one that doesn't need surgery already.  He could barely walk, I knew it was bad.  I saw him hobble off to the sidelines, then tell the trainer to forget it that he was going back in to play, and he did. He finished out the game, but he was in a lot of pain.  I was proud of him for sticking it out and finishing, even when it hurt so bad.  It was hard for me to see him out there limping around and trying to play when I knew he was hurt, it was sad.  Since I had to stay in Salt Lake for Abby's biopsy, I had to send him home without me.  I hated that I couldn't be there to help him, but I knew that I needed to be there for Abby.  Big thanks to my friend Heather for letting Brock ride home with her and the boys and for helping him keep it iced and elevated.  He would have been really hurting on the bus.  As for now, he still can't put any weight on it, he's on crutches only.   It could possibly be a ligament tear, or something might be broken, we just don't know yet.  I take him to see the doctor tomorrow.  I'm really hoping that it doesn't need surgery or else he'll be having surgery on both his ankles.  Now that the football season is over, we can move forward with his surgery on his foot that's needed surgery all season too.  We will set a date tomorrow when we see the doctor, hopefully it will be soon so that he can recover and be ready to play again.  I'm extremely grateful that his ankle held up through the whole season and that he could play, Brock loves football!

     The next morning Abby and I had to be at Primary Children's at 6:00 for her 7:30 biopsy.  We were both so tired because we didn't go to bed the night before until after midnight, so 5:00 came really fast.  We went through the regular pre-biopsy routine, nothing was out of the ordinary.  Dr. Day was performing the biopsy again, and we had a nice chat with him before he started.  I think that both Abby and I felt confident that it was going to come back clean.  My pager went off after only about an hour, it usually takes longer than that.  I walked down the hall to the cath lab to talk to Dr. Day about how things went, and then I could see that there were 2 people waiting to talk to me, not just one.  My heart sank when I saw it was Dr. Kaza, Abby's transplant surgeon.  Don't get me wrong, we love the man, he is amazing, but seeing him waiting in the cath lab scared me to death.  We talked for a few minutes, then they told me that Abby's pressures that they measure during the cath were much higher than they've ever been.  They've never told me that before, ever.  Her pressures in the cath lab have always looked okay.  The cath measures how well the heart is pumping and measures the pressures in the heart and lungs, Abby's were higher than usual.  I knew that this could be a sign of rejection, but that's all that I knew.  Seeing Dr. Kaza there made me think that it was something more serious, I just didn't know.  I then went up to see Abby in recovery and when I walked in she was crying.  She's never crying in there, usually she's happy and just ready to get out of there.  They told me that her blood pressure was way too high and that she had a horrible headache.  Her last blood pressure was measured at 152/112, yes, that's way too high.  Apparently, her blood pressure had also been high during the procedure as well.  They wanted me to give Abby her blood pressure meds, then we just had to wait in the pacu until it came down enough for us to leave.    By this time, I had decided that Abby was still in rejection and I had already started texting the other transplant moms so that I could try to determine what was going to happen next.  I was pretty worried.  The guessing game is horrible, I wish I didn't play it!

     After almost 2 hours, they finally let us go down to the cardiology clinic for an echo and to meet with the transplant team.  Everything, other than her cath pressures looked really good, so we were feeling pretty good about things again.  Dr. Molina told us that high pressures could also be a result of the steroids Abby's on, it's not always rejection, but she wanted us to stay in Salt Lake until the biopsy results came back, just in case.  We knew that if the biopsy looked the same or worse that Abby would be admitted.  They usually come back at about 4:30, so we had a couple of hours to waste; So, we did our normal waste time activity and went to a movie.  We saw Wreck-It Ralph, or I guess I should say that Abby saw it, I took a much needed nap.  When we got that call that the biopsy was a 1-1-0, which is almost perfect, we were relieved!  They do want to monitor Abby's rejection med levels closely, so she'll have to have a lab draw on Friday.  Then they wanted to see us the next Monday again, but that's the day of Brock's football banquet, and I feel like it's too soon, so I'm going to call and see if we can push it to the Monday after Thanksgiving instead, I really don't want to make the drive again next weekend, I need more time.  Even though the weather was horrible, we decided to drive home anyway, I felt like I needed to be there for Brock.  Luckily, somehow, we made it home.  The roads all the way to Beaver were awful, It was a major blizzard and the roads were snow-packed.  I was physically and emotionally exhausted, but we made it. We obviously had some help from above to get here safely!  I think it's a good thing that we came home Friday so that we cold have a couple of days to recover, we needed it.

     I've noticed the last 2 days since we've been home, that when people see Brock on his crutches and find out he's now injured, that on top of everything else, they give me such an incredulous look, like they just can't believe it that all of this could be happening to us.  Then they just look so sad.  Some people have said that they don't know whether to laugh or cry when they hear everything we're going through, and I know how they feel, I've spent some time laughing, but lots of time crying too.  It's a lot to deal with, and it's hard.   A friend at church today told me that she puts me on a pedestal, but really, that's not where I deserve to be.  I've spent a lot of time this week feeling picked on.  Thursday night when Brock got hurt and Friday, I think I reached my all-time low.  I spent some time trying to figure out what I had done wrong to deserve all of this,  I also spent some time trying to convince myself that I can't just give in and throw in the towel, it doesn't work like that.  I also even threw it out there and admitted to my heart friends in my Intermountain Healing Hearts group that I was having an extremely hard time, thankfully they responded and were there to try to help me out of my rut.  I'm proud to say that after two days of self-pity, I got over it.  Today, after a couple of nights of good sleep and a massage, I'm feeling more like I'm ready and able to somehow deal with things again.  I won't give up, I know that I've said it before, but things have to start getting easier, this time I mean it, they really have to.

We went and saw a great movie yesterday, well the second half was great anyway, I slept through the first half, but I heard it was good.  We saw the new James Bond movie, Skyfall.  During a part that I was awake, they recited the ending to a Tennyson poem called Ulysses.  I loved the ending and felt like it truly fits what I'm feeling tonight:

tho' much is taken, much abides; and though
We are not now that strength which in old days
Moved earth and heaven; that which we are, we are;
One equal temper of heroic hearts,
Made weak by time and fate, but strong in will
To strive, to seek, to find, and not to yield.

"Not to yield," that's my goal for this week.  Thanks for your fasting and prayers for Abby the past few weeks.  Now Brock could really use some as well. We're praying for good news tomorrow!   Our bishop today told me that maybe he'll just block out some time each Sunday to give the Doman family priesthood blessings.  He thought it was funny, but inside I was thinking that that might just be a perfect idea!  

Tuesday, November 6, 2012

5 busy days at home, then it's back to Salt Lake!

     We have been home from PCMC for 4 days.  We were discharged last Friday.  The transplant team and nurses and doctors and pharmacists and everyone were incredible.  They knew that I really wanted to be home for Brock's game that started that night at 5:00, so we really needed to leave the hospital by noon, and they did everything they possibly could to get me there.  Abby had her echo first thing in the morning, it looked great!  Then we had to see Dr. E and the transplant team and get some final instructions and a new med schedule.  They made some major adjustments to Abby's meds in hopes that it can help her to start feeling better, then some meds were also added again because of her rejection.  She's now taking a bunch of meds again, it reminds us of the right after her transplant!

Thankfully, she should be coming off of some these very soon.  We also had to pick up some new meds at the pharmacy, they even hurried to get us out of there on time.  So, after we finished everything we had to do, we were walking out of the hospital doors at 12:20-pretty good!

     We stopped for gas and lunch on the way home, but mostly we just hurried.  I knew that I couldn't go too fast because I couldn't get another ticket, but it was amazing because no matter how fast I was driving, there was always someone else driving faster, so they could get the ticket instead of me!  I pulled in our driveway and dropped Abby off, and walked down to the game.  Right when I walked into the stadium they started singing the National Anthem, perfect timing!  You wouldn't think that it would matter to a 16-year-old kid if his mom is at his football game or not, but it does, Brock even told me he looked up in the stands to see if I was there!  It was a good thing that I was there too because Brock was amazing!  Desert Hills was only up by 6 with a couple of minutes left in the game.  Bear River had the ball and only had to go about 30 yards to score, and it was only first down.  Brock made the last 3 tackles in the game, which made Desert Hills win, it was awesome.  I'm thrilled he played so well, he needed it, we had had a rough week and he really needed the boost.  I love that he was interviewed after the game, usually linemen don't get recognized, but this time Brock did, and he deserved it.  Now they move on to the semi-finals against Spanish Fork.  I thought I was so smart when I scheduled Abby's biopsy next biopsy.  I thought the game would be at Rice Eccles on Friday night, so I scheduled her biopsy for Friday morning, but, it turns out that the game is Thursday night instead.  So, I'll teach school for a half day on Thursday, then we'll load back in the car again and head up to Salt Lake for the game on Thursday night and the biopsy/cath on Friday morning.  Hopefully we'll be back home by Friday night with the news that Abby isn't in rejection anymore!  I hope we win on Thursday so that we can go back up next week and watch the championship game!

This is Brock after getting done with his interviews, I think he was pretty excited!

I think this is the last play of the game, Brock's #77, great stop!

So far this week we've had some good things happen, and some not so good.  Abby is finally feeling a little better.  Today is the first day she hasn't had a sore throat in a long time!  She's even had a little more energy and is finally getting a little color back in her cheeks (unfortunately, they are getting the "steroid look", the puffiness is there again and Abby hates it!).  Abby has gone to school for 1/2 the day both yesterday and today and then she comes home and sleeps for a few hours, it just wears her out.  The bad and frustrating thing is that they decided to try to wean Abby off of one of her medications that could possibly be giving her headaches.  It's a med that she also takes for her pulmonary hypertension, so they increased her blood pressure med and added another med that would hopefully take the place of this med.  But, the last 2 days she's had her swelling back in her feet and legs, really bad, worse than ever!  I can't believe that going off of only 1/2 of a pill can make that much of a difference, but I guess it can.  She was supposed to completely go off of it tomorrow, but I'm thinking that might change now.  I'll have to call the transplant team tomorrow morning and see what they want to do.  Not only that, but she's still getting headaches too.  We will find the right combo of meds for Abby to feel the best, it's just taking some time.
     For me, this week has been completely overwhelming.  I've just had too much that I've had to do.  I missed 6 days of school the past 2 weeks and I had to get caught up there.  Not only that, but 
the trimester ends this Friday so I really need to be caught up so that my grades will be done in time.  Plus, we leave on Thursday to go back to Salt Lake so I need to be done before I leave, and I need to be ready to miss school on Friday again. I also came back with an email telling me that I have to fill out all of the paperwork for FMLA again because I've missed 6 days of school already, the bad thing is that it all needs to be filled out and turned in before I leave.  I've also had to get Abby's meds all filled and ready and because she's taking meds 4 times a day again, I have to constantly be reminding her. We're also supposed to be watching her pulse and blood pressure and her GI issues real closely too so that's always on my mind.   I've been getting caught up with laundry and cleaning around here since I was gone all last week and we will be leaving again in 2 days.  I've been trying to pay all of my bills since it's the beginning of the month, that's always fun, especially when you come home to a mailbox full of medical bills. Brock and Abby have SEP's today and tomorrow and I have to go to those.  I had time to go to Brock's today, hopefully, I'll make Abby's tomorrow.  I've also been trying to prepare my young women's lesson for Sunday-which is on using your time wisely, HA, now that's funny!  There's just a lot of stuff to do and to think about, and this is one of those weeks that I start thinking that maybe it's too much for just one person.  What happens if I just wake up one day and I'm too tired to keep doing it all?  I know that's not an option, I know that I'll just keep plugging away, but honestly, I'm tired.  It's been a long and hard couple of weeks and it's wiped me out completely.  But, it's not over yet so I better just keep on going until I can't go anymore.  I will just keep doing the best that I can and then hope and pray that that's enough.  

     Last week I forgot to thank those of you that brought Britt and Brock dinners while we were gone, so I'm thanking you now.  I do appreciate it, and so do they....... a lot.  Also, thanks to those of you that included Abby in your fast last Sunday, it meant a lot to us to hear from so many of you that were thinking about her.  Abby also had a very special priesthood blessing from the bishopric in our ward on Sunday, it was perfect, and we are so thankful for that.  I think that on Friday we're going to get the news that she is no longer in rejection and she's going to turn the corner on this yucky bug she's had for last 3 weeks!  We're ready for only good news and smooth sailing!

Thursday, November 1, 2012

.....and the final diagnosis is?????

     It sure wasn't a very exciting day around here today.  Abby was a superstar last night and finished all of her cleanse, and it did the job.  She woke up feeling clean and empty, but unfortunately, she still had her upset stomach.  She also woke up with a bad sore throat again and a headache.  She actually said that it was one of her worst days yet!  Talk about feeing discouraged, after 3 days here, she was feeling worse!  Abby slept most of the morning and the doctors were nice and just left her alone, but I joined them when they were rounding about her.  They decided to do a strep test, even though they really didn't think that was the problem, but the results haven't come back yet.  The good news is that the labs from the 3 major transplant viruses all came back negative, yahoo! But, that's also bad news because we still don't know what virus she has, it's impossible to test for all of them.
     Even though we didn't figure out what she's sick with while we've been here, I think it was a good thing we were admitted.  The transplant team was able to take care of her blood pressure issues and they also decided it was time to make some major medication changes.  Abby has had chronic headaches, and after really researching and discussing, they decided it's probably from her pulmonary hypertension medication, so they're going to try to taper Abby off it and increase her blood pressure instead.  We're just hoping that her headaches go away, but her leg swelling doesn't come back, that's our major concern with going off this medication.  After the GI team and transplant team got together, they decided that some of Abby's stomach discomfort is from another one of her meds, Valcyte, the one med that my insurance company didn't want to pay for anymore, it prevents CMV.   So, after Abby tapers off of her steroids, they are going to take her off of  Valcyte.  Last time she went of this med, she immediately got CMV, so we're praying that it doesn't come back this time.  Abby's white blood count is still low, so she's still got something, but we all decided that unless she gets worse, she can recover at home as easily as the hospital.  An immuno-suppressed kid can take up to 6 weeks to get rid of a virus, so we might just need to be patient, not a patient (hahahahaha, my humor gets warped after spending time up here!)  Dr. E. thinks that the rejection is under control now, but we won't know for sure until Abby's next biopsy which is next Friday.  It's going to be a nerve-racking week, it will be a real relief when we get those biopsy results.  We didn't talk to the GI team today because they were still waiting for results from her Celiac panel.  I think they're going to want to monitor Abby a little more closely for a while.
     Changing all of these medications can be a little stressful, Abby hasn't had great success in the past with that, but wouldn't it be sweet if it took away her headaches and her upset stomach?   I'm just hoping that the next few weeks work perfectly, no more rejection and no problems with her medication changes, and that this crappy virus goes away quickly!!  The plan tomorrow is that the GI team will meet with us again and decide on a plan of action for her stomach issues, Abby will also need another echo before we can go.  The transplant team wants to see us again to talk about her new med schedule and about her steroid taper.  They're also planning on monitoring her pulse and her blood pressure very closely for the next little while.  Then hopefully we will be discharged and on the road by 12:00 so that I will make it to Brock's game at 5:00.  Dr. E. is amazing, she followed through with her deadline just like she promised (I hope I'm not disappointed tomorrow, because this is what I'm planning on!)  She knows how much it means for me to be there for Brock, and that's what I love about her, she gets it.
    Overall, when I asked Abby how she was feeling, she said that she probably could've gone to a couple of classes of school today, but she didn't think she could make it through the whole day.  She's also worried that her cheeks have gotten bigger, but I honestly don't notice a difference, she looks just as cute as always.  She's tired, it's just really hard to sleep here, and she knows that she will have to be extremely careful about germs when we get home again, just until she's tapered off of the steroids a little more and when her blood counts are up again.  But, she wants to go home, really, really bad.
     How am I doing?  I am okay.  It's been a frustrating week, but very worthwhile, we learned a lot about Abby and about some things we can do to make her feel better.  I am tired, physically and emotionally tired.  I feel like I've been on an emotional roller coaster for the past couple of weeks, and I don't think it's going to end quite yet, but we're getting close.  I felt so bad about my chat with Dr. E yesterday that I apologized to her today.  I didn't feel bad about what we talked about, that actually made me feel better about things, but I didn't like the way I approached it, it just wasn't like me and it made me feel uncomfortable.   I told her that I was just so discouraged about things and so extremely tired, but that I didn't ever want her to think that I didn't completely trust her.  She said that she actually felt really good about the things we talked about and that she was grateful to me for speaking up and letting her know.  She also said that she was also discouraged and that she loves us and that it's hard for her to see us feeling so frustrated.  I love that we have such open lines of communication, I think it needs to be this way.  I do love our transplant team and we are so grateful for them and for all of the time they spend helping Abby and doing what's best for her.  I know that they would do anything for Abby, and for that I am thankful.  We know that we are in the best possible place we could be and that Abby will always get the best care here.  The nurses and techs here are all so incredible, they always make us feel like we are VIP's, they do an excellent job of going out of their way to make us feel comfortable.  It really does feel like Abby is their favorite patient, and that's important.  We are just so thankful for everyone that is involved with Abby's care, we feel like they were hand-picked just for us, we couldn't ask for anything better.
     I feel like it's time to go home.  I can watch her closely there and I can also take care of the things at home that I need to be doing.  Maybe I can get caught up a little  before our trip back up here next week too.  I'm not really excited to go home to my house which is all full of germs from Britt and Brock throwing up this week.  I'm probably going to have to fumigate the whole place before I can allow Abby to step inside!  But, we'll do what we have to do.  I'm really hoping that Abby is feeling better before her biopsy next Friday, I don't like her to be in the cath lab when she isn't feeling good, it makes me nervous.  So, Abby's got about one week to start feeling good again, she can do it!   Overall, things are just okay, they could be better, but they could be worse too.  I think I'm going to do everything I can to make myself be grateful for at least having things be okay for now.