Monday, October 31, 2011

steroids.....from 5 mg/day to 55 mg/day.........not the best Halloween ever!!

Definitely not our favorite Halloween ever!  It was fun to see lots of the docs and nurses dressed up at the hospital however; In fact, Buzz Lightyear put Abby's IV in this morning! 

It all started okay, fabulous really.  I was extremely nervous to hear the results of her heart cath because she's had a lot of swelling in her feet and legs this week.  One night last weekend, her ankles were the size of softballs!! She's been walking around with sore feet all week. I thought it had to be because her pulmonary hypertension was flaring up again and I was ready to hear Dr. Day say her levels were too high.....but, he said that everything looked good, the numbers were the same as last week!  Next stop was her echo.......and the results: things looked awesome, much better than last week and much, much better than 2 weeks ago!  I was starting to feel really good about things, I figured all my worrying this past week was for nothing.  Next stop, talk to the transplant team.  They thought everything looked good, and her heart sounded really good too, but then we started talking about Abby's swelling, her lethargy, her headaches, and just feeling kind of blah lately.  This was when they started worrying about the results of the biopsy, which we wouldn't get back until 5:00.  We made 2 plans, one for if the biopsy came back clean, one for if it didn't.  We hopped in the car to drive home, knowing that we might have to go back to Salt Lake tomorrow if the biopsy wasn't good and then spend a few days in PCMC getting IV steroids.....the waiting game began!

I got the call at 5:30, just as we were pulling into the driveway.  Abby's biopsy results looked the same as 2 weeks ago, not worse....but not better either.  She's still in minor rejection.

The good news: We don't have to go back to Salt Lake tomorrow.  This would have been bad because tomorrow is the first day I'm supposed to report back to school.  I don't start with my classes, but I have to be at the school.  This was a relief to me, I was having a hard time thinking of an alternate plan.

The bad news:  We have to increase her Prednisone steroids to 27.5 mg twice a day....almost as much as she was on right after the transplant!  Right now she's only taking 2.5 mg twice a day, so this is quite an increase!  This really stinks for Abby because she'll be back to having puffy cheeks, which is really hard for a 12-year-old girl, and it's taken so long to get them back to normal.   But the worst part about it is that she probably won't be able to go back to school next week.  This devastated her the very most.  She's been counting the days until she was able to go spend the day with her friends.  Ever since she heard the news there's been lots and lots of tears, and that's really hard to see because Abby has been so stoic through everything so far.  It just broke my heart to see her so sad and discouraged.  We're just hoping that this does the trick and the rejection is gone next week and the prednisone taper will happen fast so she can get back to school.
The other bad news: We have to go back up again next Monday.  This is going to be real tricky because that's my first day with my new classes.  I'm not sure how that's going to work, but it's already causing me a bunch of anxiety!  I have to take Abby, but I also have to be to school, hmmmm..... can't do both.  It's a no-win situation for me.  I was planning on this happening a lot, but just not the first day.  Just another thing to stress about I guess.

So, things aren't great.  They definitely could be worse, much worse, so we are so grateful for where Abby is right now and all of the progress that she's made, but we always wish that things were perfect too.  I keep telling myself to expect bumps in the road, but I also keep believing that we won't have any....this is Abby we're talking about and if you've heard our story up to this point, you know that everything happens just how it's supposed to for us!  I know we'll work through this, things will work out, it's okay to be a little sad and anxious sometimes, as long as we can bounce back and keep our chins up, this is just a bump in the road and we will get through it.


  1. I'm always so impressed with Abby every time i read an update! Hope things get better with the biopsy next week!

  2. oh Abby I'm sorry you are back to chubby cheekies, and can not go back to school yet. I will say a prayer that your steroid increase will do the trick for your heart and you can wean back down soon.Hang in there Domans, you have come so far!

  3. Good luck with next week. If I lived close to you I would totally take Abby up for the day. My kids love the play room and know their way around the hospital.