Saturday, November 23, 2013

Crappy Halloween, clinic, changes in meds, and a championship!!!

     My last post was on October 14th, since then, we've had lots of ups and downs around here!  I can't believe that I didn't even post about Abby's clinic either, but I've been busy just trying to keep up.

Things started out great in October, and then, in a typical Abby and October manner,  she got sick, really sick.  She was feeling awful.  So crappy that we ended up calling the transplant team and getting her in to see our pediatrician.  Abby wouldn't eat or drink anything and she was feeling so tired, she was sleeping all day long.  She ended up going in to the hospital twice to get fluids and lab draws to find out what was wrong.  The first time was a fiasco!  The nurse tried 4 times to get blood and didn't have any luck, so she had to call up backup to help her.  It wouldn't have been so bad, but Abby also had a serious migraine at the time.  The one funny thing that happened, was that after about 45 minutes of the nurse poking and searching for blood and Abby crying, Britt called to talk to Abby to try to make her feel better.  Abby was too upset to even talk to her, so Britt said to put her on speaker phone.  Then she said, out loud so everyone in the room could hear her, including the nurse, "Abby, just because you have an idiot nurse, doesn't mean you have to be a butthole!"  Yep, out loud for everyone to hear, it was awesome.  I hurried and turned the phone off speakerphone.  I got a good laugh out of it, Abby not so much, and I think that Britt was just embarrassed...and the nurse didn't know what to say!  A few days later it was back for more fluids, this time we tried the ER and we had a lot more luck.  The bad thing was that it was on Halloween....Abby's 3rd year in a row being in the hospital on Halloween.  What a bummer!  Thankfully the labs all came back negative and after almost 2 weeks Abby started feeling better.  I guess it was just a nasty virus and she has been feeling better since then.

Right after Abby got feeling better, she had clinic.  We went 10 weeks without a clinic visit!  The transplant team told us that her heart, as well as everything else, looked perfect and that we wouldn't have to go back for another 3 months, that was good news!  We made it into a fun weekend while we were there.  We celebrated by going shopping and out to lunch with Abby's transplant friend Miabella and her mom. It's always fun to see our friends from up north!  Then we got to watch Brock win his quarterfinal football game, and I was able to spend some much needed, quality time with some good friends as well.  All in all it was a good weekend.
But, to keep us on our toes, about a week and a half ago, Abby started getting the swelling and redness that's usually in her legs and feet, in her arms too.  One day, it was even in her cheeks.  This is something that has been hard for Abby since transplant.  Sometimes we think that it's something that she can just live with if necessary, but then it flares up and we think that we need to figure out what's causing it, this was one of those times.  We heard from some other transplant recipients that it could possible be from one of her blood pressure medications, so I called the transplant team to see if we could make some changes to see if we could finally get to the bottom of this.  They have always been extremely reluctant to make any changes to Abby's meds because every time they've made a change, it throws everything off.  But after talking to the doctors, they came up with a plan, this was just last Wednesday.  The plan was for one week, to lower her dose of Amlodopine, which regulates her blood pressure, but also helps with her pulmonary hypertension, that's why they didn't want to take her completely off of it.  We have been tracking her blood pressure, morning and night during this time to make sure that it doesn't raise too much.  They really didn't think that this would help her swelling, but it was worth a try.  The funny thing is that since Wednesday, her swelling has actually been worse, not better!  She had to leave school early on Thursday, and she had major problems yesterday after our drive up north too.  I'm supposed to call again on Wednesday and let them know how things go.  If we don't see an improvement, we're going to be referred to a vascular specialist to see if that's where the problem is.  If they can't figure out, we're going to keep searching.  Something is causing this, and for some reason it seems to be getting worse.  I don't think it's something that Abby can just live with anymore.  We've got to figure it out and do whatever is necessary to fix it.  Thankfully her blood pressure has remained steady even going half off of one of her meds.  I just feel good that we are finally trying to do something about it!  I will keep you posted, but I have a feeling we'll be making a trip up north this month to see another group of doctors.

.......and now to the "up" part of our past month.  We've spent the last 3 weeks traveling up north every weekend to watch Brock and the Thunder play football!  They just kept winning, and last night they won the state championship!  I've never seen Brock happier than he was last night after the game.  He couldn't stop smiling and crying and yelling and hugging everyone, it was just too awesome.  I know that many of you have already seen the pictures and read the Facebook posts, but I have to put it in our blog too for when I print up our blog book again.  It's our family record of what's going on.  The game last night came down to the last second.  It was the perfect ending to a sweet high school career.
Brock had an incredible season this year, he played really well.  Brock loves football, he loves to work hard, and he loves the game.  He's been very blessed to play for Desert Hills, he's played at Rice Eccles each year since he was a sophomore, finally, this year, they took home the trophy.  The senior class that he plays with is full of talent and good kids as well.  The coaches are amazing.  They've always been good to Brock both on and off the field.  I've always been grateful for the coaches in Brock's life because his dad doesn't want to be a part of his life.  It's good for him to have some positive role models to look up too.  Brock is also lucky because he has the shape and size of a football player, but he also has the desire and motivation, he knows how to work.  It isn't official yet, but there's a pretty good chance that he'll be playing football for SUU next year, we'll just have to see how things play out from here.
Brock and Coach Franke, I love how happy they both look!

Britt.....nice earmuffs!

The captains heading out for the coin toss.

Brock and some of the greatest kids ever!  It will be hard to see all of these boys head their separate ways after this year, I hope they'll remain friends forever.

This is the crew at the semi-final game, it was much colder at the championship.

Abby and  Britt with their Thunder gear and ready to go!

The Game!

Brock after the semi-final game, already looking forward to the state championship.

Crazy, but proud mom at the game!!!  I will truly miss watching Brock play high school football, I think I love it as much as he does!

It's been quite the month at my house.  I always think that things will settle down, but I'm starting to realize that they never will.  I feel stretched pretty thin most of the time, but mostly I'm just so thankful for where we are today.  I've been blessed with the greatest kids, they're amazing in every way, what more could I ask for??  I'm the luckiest and most blessed mom ever!