Tuesday, October 30, 2012

After a 6-month break, we're back at PCMC....

     I can't believe we're back here at PCMC! My blue couch/bed  just doesn't look too inviting!  They tried to put us back in our old room, but there was another kid in it and they refused to kick the kid out for us, rude, I know.  It feels weird to be in a different pod, but there's a chance they'll move us back to our regular room tomorrow.  Here's a funny thing.........the last time Abby was in rejection was last year, exactly last year, we had clinic on Halloween and found out she was in rejection later that day.  She wasn't happy, in fact, she spent most of Halloween crying because she was going back on steroids.  This is not going to be a yearly occurrence, this annual event is going to end after this year.  I have to admit that I hate dressing up for Halloween, but, it beats sitting up here in the hospital.  Everyone keeps telling us that it will be fun to be here tomorrow, it really stinks that Abby's new costume is sitting at home still in the package.  Maybe she can be a pirate next year.  Last year on Halloween, Buzz Lightyear did her lab draw, they'll have to surprise us this year!

     So, why are we here?  After Abby's biopsy last week, when they discovered she was in rejection and started her on a pulse of steroids, she started feeling worse, not better.  It seemed like each day Abby's energy level went in the wrong direction.  We were already supposed to take labs on Monday morning, so I called the transplant team and just let them know that it seemed like Abby was getting sicker, not better.  They called me when they got Abby's labs and said that there was no change in her blood counts, and they were concerned about her feeling worse, so they sent us to Dixie Regional to get an echo and a EKG.  The echo results showed no change either, it should've showed some improvement since she'd been on the steroids.  So, this, plus the labs, plus the way Abby was feeling was enough to worry the doctors, they decided they wanted to see her again.  So, yesterday, after only 4 days at home, we hopped in the car and drove up again.  I've got to tell you, I'm getting tired.  Between teaching and driving and clinic and caths and Britt's Lasik, and football games, etc.  I'm getting tired.  I feel like I haven't had a chance to recover since last Sunday when I spent the night staying awake with Abby while she was throwing up.  This is what we look like now, after all of our traveling and clinic days:

Hahaha, we've got too much down time while we're waiting for the docs, we keep discovering these great apps!

    After seeing the doctors today, and reviewing things from the past week, Dr. E. decided she wanted to admit Abby and get a better look at some things.  She just didn't feel like things are adding up like they should be, they look a little fishy to her.  I completely trust everything the doctors here do, if they told me that Abby needs to hang upside down every day, I would ask them when, and we would do it. My instinct is telling me it's just a virus on top of her rejection, and that after a couple of days they'll send us home and she'll be back to normal.  But, I think I'll trust the doctors more than my instinct.  Today, they took a whole bunch of labs again.  I know they're testing for CMV and EBV again as well as Parvo.  They're also checking her blood counts again and then a bunch of other things that I hadn't heard of.  The plan tomorrow is for Abby to have visits from a bunch of teams, the only one I know for sure that is coming is the GI team, maybe all this has something to do with her eosinophilic colitis again.  I think the psychiatric team might stop by again too, being back up here in the hospital isn't easy for Abby, especially when things had been good for the last 5 months.  We had kind of forgotten that life after a heart transplant is hard and won't always be a smooth ride.  She misses school and friends now more than ever, it had become the "normal" again so it's hard to be away from it again.  Last year, no school was the "normal," it wasn't as hard.  A couple of things that we've already discovered after spending the day here is that Abby's blood pressure is very high right now, is hovering right around 140/90.  This could possible be from the steroids, but maybe not, it is probably why she's been having headaches.  Her pulse has been hanging right around 85.  This sounds like a normal pulse rate for you and me, but Abby's hasn't been below 110 since her transplant.  When we take it every morning and night, it's usually between 115 and 125.  This is weird, so the doctors are looking into that too.  Just too many things going on that shouldn't be.  Hopefully, they'll get some answers.

     When the transplant team told us they wanted to admit Abby, I said that was okay, but that I needed to be home by Friday at 5:00 because that's when Brock's big quarterfinal football game is.  I don't think any patient has given Dr. E. a deadline before, but it just made her laugh and she said she'd do everything she could to get things figured out by then.  I'm proud to say that I in the last 2 years, even with everything that's been going on, I haven't even missed one of Brock's football games, and I don't plan on missing one either.  Hopefully we can get a diagnosis and get it treated quickly, I need to be home.  Britt and Brock probably feel like orphans the past couple of weeks, it seems like we've been up here a lot!  If you see them, please just make sure they're okay, I hate it when they're not here with us!  I just have to keep remembering that it's only going to be for a few days (hopefully anyway), not like last year at all!

     Some good news is that after some intense arguing and complaining and even maybe a few tears, I convinced our insurance company to pay for her $3,700/month medication!!!  They couldn't tell me how long they will cover it, but at we'll just go month by month for now.  I was happy to at least get a short-term commitment.  The bad news is that because of how Abby's doing, she's still on a mega-dose of steroids, they haven't started the taper yet.  The longer she's on them, the better chance she has of having the side effects, like the pudgy cheeks, acne, etc.  The things that are a nightmare for every 13-year-old.  Abby is not happy about this at all!  Plus, they've also put her back on a couple of her other medications as well.  It seems like we're going in the wrong direction.  We just need to get past this and move on.

     The most shocking news today came when our social worker, Juliana, came by to visit.  She told us that Abby's donor family has decided that they want to meet us!  We have sent letters to them a few times, but have never heard anything back, so this news was very surprising, it was not what I expected to hear today.  I told Julian that we would love to meet them, but that we need to get some background information first, and maybe communicate through writing for a while too. I can't even explain all of the emotion that this brings up, and I don't think you can understand unless you're in this situation. This now isn't so abstract, it's real.  We will now attach Abby's new heart to a real person that had a family and a life and that's hard.  The feelings of guilt try to creep in again too.  It made me feel anxious to think about actually meeting them, but so grateful too.  When they see and meet Abby, and they know that they saved her life, I think they will feel a sense of peace and hopefully, some joy.  I can't wait to be able to thank them, in person, for the decision they made.  So many emotions, it's just a hard thing to process, it actually made me cry and I haven't even met them yet!  This is just a hard thing, it's hard to put into words and it's probably hard for most people to understand, but it's just hard.  I'm glad I have a little while to process this, and Abby too.  I'm glad the psychiatric team is coming to talk to her because that's a lot for a kid to think about, for anyone to think about.  Just too much to figure out on your own.

     Just a few weeks ago, Brittany had me watch this episode of E:60, a show that's on ESPN about this boxer named Paco Rodriguez that died while boxing.  His family made the decision to donate his organs and he was able to save 4 people's lives.  It then went on to show the meeting between Paco's family and his heart recipient.  It's amazing, and if you have anything to do with organ donation, or even if you don't, it will probably make you cry. Here's the link, it's 17 minutes long, but it's worth watching.  http://www.youtube.com/watch?v=irB3v1i7VVc 

Tomorrow is going to be a big day, lots of doctors, lots of tests, and hopefully lots of answers!!!

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