Monday, October 24, 2011

Leave at 4:50 AM-drive to SLC, go to clinic, drive back to St. George-Arrive 4:50 PM

 4:50 AM-Hop in the car and pull out of the driveway...........

I love driving in the morning, I would do it this way every time if I could!  There's hardly any traffic, and it's actually pretty relaxing.  Abby slept almost the whole way up, and I just listened to my ipod and cleared out my head a little bit!  Even after stopping to get Abby hot chocolate, her favorite, we stilled pulled into the parking lot at Primary Children's at exactly 9:15, right on time.  Abby had her labs drawn-only one poke today, and then went in for her echo.  I was stressed, I'll admit it, I was just worried about what they would find today; But, everything looked great!!  After I heard the results, I was able to relax a little bit.  Then we spent some time with the transplant team and Dr. E. 

I decided it was time for me to ask some questions about rejection, because last week I felt like I didn't know anything and I didn't feel good about that.  I'm grateful that they were willing to spend the time with me to answer my questions.  One good thing that I did learn is that having a few episodes of mild rejection is actually good....if there was never any rejection, that would mean that the immuno-suppresant drug level was too high, and that's not what we want.  So, as long as it's minor, and it doesn't happen too many more times, everything is still looking good.  I also learned the difference between vascular and cellular rejection and what the treatment is for both.  I'm not going to go into it, but I actually understood what they were telling me.  If Abby ever has a higher level of rejection, they will probably admit her, and give her IV steroids for a few days and hope that will clear it up.  Her cellular level was 2.5 last week, which is minor, 3 or above is more serious.  The not so good news is that we have to go back up again next Monday for another cath/biopsy to make sure there is no rejection.  An echo doesn't always show everything.  So, we will probably head up to Salt Lake on Sunday night for an early morning visit to the cath lab and another clinic visit.  I don't think the cardiology clinic would know what to do on a Monday without seeing Abby and I there!  It seems like even though they told us we'd only be going every other week, we've pretty much been up there every week anyway....but, I can't complain, we really shouldn't even be home yet.  If Abby's Prograf level is where it should (we are still waiting for the phone call), Abby will get to go off of 3 of her meds!!  No more Valcyte, Zantac, and Nystatin....woohoo!!! She will also be able to come down even more on her steroids, that means we are one step away from being all the way off of them!  Goodbye puffy cheeks :)  But, I'm not counting on it, with some other weird things that happened with Abby this week, I'll be surprised if it comes back where it should be.  Going off her meds scares me anyway because it seems to mess up all of her levels and make other things happen too!  It just makes me nervous.

I felt good about clinic today, I didn't feel rushed and I left much smarter than when I got there....and that's good!  It was kind of strange because Abby's heart rate was really low, and her blood pressure was really high, but they couldn't figure out why.  It just seems like there are lots of little things going on right now....let's just hope they stay little!  Then we got back in the car, grabbed some lunch and were on our way back to St. George. 

4:50 PM-Pull in the driveway at home!

Exactly 12 hours, and you know what?  I'm tired.  That was a long day.  I think I hold my breath the entire time we are in the clinic, I just feel tense, so when we leave I'm always tired; then, to have to drive back was hard.  What am I going to do next week when I'll have to teach school the next day?  I won't get any recovery time!  But, I'm just going to have to suck it up and do it, I have no choice.  I go back to work November 1st whether I'm mentally ready or not, I'm just going to have to make myself be ready.

By the time we got home, I was tired and ready to do nothing for a while....Abby on the other hand, wasn't tired.  So what did she say as we were pulling into the driveway?  "Mom, can I please go to soccer practice, we are only 1/2 hour late and it will be the first time since May that I can play! Please!!!"  How do you say "NO" to that?  So, we got right back in the car and I took Abby to practice.  Abby got to play soccer today and she did great, she is so tough, and I love it.  I didn't dare leave her alone at practice, I'm way to scared to leave her anywhere where she's going to be running, so I stayed and watched her play......and it was perfect  .It was so good to see her doing her normal things, and being the Abby she used to be!!


  1. yay for normal things! Good luck next week!

  2. glad she is able to play soccer again! i would have guessed she would have to wait a long time before sports/running so i'm glad she can get back to the things she loves so quickly!! go abby!