Thursday, April 26, 2012

Surgery today....we are praying for answers!

I think today is going to be a long day!  I gave Abby her last that "cleanse" drink at 11:00 (we are always exact at following doctor's orders!!) then it was one of those nights where you really don't ever fall completely asleep.  The one time I did fall asleep I had a dream that we were at clinic, and Abby was being completely disrespectful to Dr. E.  and the transplant team.  Not only was she was refusing to let them listen to her heart, but she was yelling at them too.  She was screaming, "You can't just listen to me whenever you want, it's my heart"  and it was in a nasty, loud voice with spit flying out of her mouth.  Dr. E was pleading with me to calm her down because she was so out of control.  This is actually really funny because it's so opposite what it's like at clinic, and so opposite Abby.  Believe me, it wasn't funny in my dream, I was totally embarrassed, especially because I had no control of Abby....I couldn't calm her down!  Anyway, it's going to be a long day.  For any of you that ever have to drink 64 oz. of Gatorade with Miralax mixed in, after taking 4 tablets of Dulcolax, and drinking 10 or more cups of clear liquids without eating solid foods-It's not a good idea to try to jump on the trampoline, even if it is just for a second, Abby learned this the hard way last might be better off just chilling in front of the TV :)  The cleanse hasn't been fun for Abby, she's loved the fact that she's not allowed to eat anything-we've been forcing her to eat for the last 2 weeks because she feels so crappy afterwards, but she's hated needing stay so close to the bathroom.  I've had lots of fun with all of the puns......"This is a real bummer," or "This is crappy," or when Dr. M. said, "It will be nice to get to the bottom of all of this," etc.  But I think Abby is probably really tired of all that by now, and tired of me asking,"Hey Abby, where are you going?" with a smile on my face and then "Hey Ab, whatcha doing in there?" every time she gets up to go to the bathroom.  Thankfully, she only has another 1/2 day of this before the surgery.

Now to the serious stuff.  Yesterday was an interesting day.  We went to Primary Children's to have labs drawn again, and to turn in a stool sample.  The thing that was really stinky (hahahahaha) was the first time, we didn't turn in enough, so we had to go home and try again!  They are in the process of testing for many different things, including C-diff, Giardia, antibody tests, and many more.  That will hopefully give us some more information.  We also met with the transplant team again.  We did receive some good news, the CMV tests came back and it is gone!!!  That's good, but that also probably means that there is something more going on with Abby.  After hearing this, we were able to focus more on Abby's rejection status.  There are 2 different kinds of rejection, cellular and vascular.  I don't know a lot about this, but I'm going to tell you some of what I've learned from other parents and the docs.  Please don't take anything I say medically in this blog as fact, it's just what I think I've been told, and sometimes I can get confused.  Cellular rejection is what is most common and is the kind of rejection Abby has been in before, it takes place in the cells.  If the cellular level is a 1 or a 2, it is okay, it's not treated until it's 2.5 or above.  Abby's cellular rejection level on Monday was a 2, no worries there.  Vascular rejection takes place in the vessels around the heart, so the heart can be damaged because of lack of blood supply.  I'm not 100% certain about this, but I've heard that you can feel more sick when in this type of rejection, and that it can have more long-term problems.  There isn't as much known about vascular rejection because it isn't as common, one article I read said that only 18% of patients ever experience it.  Vascular rejection is treated if the level is 3 or above, Abby was at at a level 3 on Monday, so at least it was still considered "mild" rejection.  Both types of rejection can be treated by changes in immuno-suppresants, with steroids (prednisone) which is what we've done in the past, and then if that doesn't work, with treatment in the hospital.  For now, and because Abby still has a low WBC, we are just increasing her immuno-suppresants, thankfully for Abby, no steroids yet.  Vascular rejection makes me nervous, so I hope we can get this under control.  If anyone out there has more info on rejection, or finds mistakes in what I said, please let me know.....I am a true rookie at all of this still!!  After meeting with the transplant team yesterday, we decided that Abby likes to ride right on the edge, which is good and bad.  She is always just borderline, just in between, what course of action to take.  She's been like this with her cmv, blood counts, rejection levels, and everything!!!  It's frustrating for the team and for us!  I guess we should be grateful it's always just borderline and not worse.

With everything that's going on with Abby right now, we decided it would be best not to plan on going on our Make-a-wish cruise next month.  This was hard for both me and Abby.  We've been looking forward to this since last July when we missed our Hawaii trip too!  Our family really needed a break from everything that's been going on this past year, but I guess we will just delay it a little more.  Brittany wasn't too upset, because now she can go on her senior trip to Disneyland with her friends, it was scheduled for the same week.  Brock wasn't too upset either because he was going to have to miss a football camp, and Brock doesn't like to miss anything that has to do with football!  But Abby and I were not happy.  I don't think my mom and dad and Meri and Rich and the kids liked hearing this either because they had planned on going with us.   I told Abby we should just plan to do it later, but she's at the point right now that she's scared to plan anything, and wants to go on a shopping spree.  The problem with that is that she's already got everything she could ever want!  I don't know, we'll think about it when we get through this.

We check for surgery at 1:30 today, the surgery will start at 3:00.  She's having a colonoscopy, endoscopy, and sigmoidoscopy.  I don't even know the difference between the 3, but it doesn't matter.  All I do know is that they are going in from both ends to get a good picture and that it will take about an hour and a half.  My 2 friends at the desk in the surgery waiting room, always have such a sympathetic look on their face when they see me, they always make comments like, "Oh no, not again Michelle!"  Yes, they know me by name, we are friends now.  I can't wait until I see the look on their faces this time-twice in one week even!  We should know some of the results just a few hours after the surgery.  We will stay at my brother's house tonight, and then depending on the news we get, hopefully we will be on our way home to St. George tomorrow morning.  I really need to be to work next week.  I miss my classes and I need to be preparing them for testing.  I've also missed so many days of work, that I only get paid for the days I'm there now, and I've now missed 3 weeks in April.
There's also a big fundraiser going Abby for this weekend as a part of the National Ford Mustang car show that's taking place at Tuacahn.  It would be nice for us to be able to attend some of the events.  As soon as I hear any news, I will let you know.  Thank you all so much for caring about Abby and keeping her in your prayers this past month.  I'm hoping and praying for answers today, no matter what it takes, I just need Abby to start feeling like Abby again!!

We have a little heart friend that needs a miracle.  I've mentioned him before, he's only 4 years old and is waiting for his 2 heart.  At this point, they have done everything for him that they can, and because of his antibodies and his blood type, there's only a slight chance he will receive another heart.  I was lucky enough to finally meet his mom this past week.  She is the perfect role model for me, full of complete grace and poise as she's going through all of this, and just full of strength.  Our struggles look miniscule compared to what they are facing right now.  I've heard that our ward is having a ward fast for Abby this Sunday, can I please ask that you also think about and pray for our friend Matthew and his family as well!  One thing we do know firsthand is that miracles do happen!



  1. Awwwe Man! Surgery? That is super uncomfortable :( Good luck with everything! I sure miss ya!

    -Nichelle Richins

  2. Maybe your dream is a premonition- I keep waiting for Abby to freak out- I know I would have by now. Prayers all goes well today and the Team gets the info they need to get you guys HOME!

  3. You guys don't know me but I have been following your story for the past year since I found out about it over facebook from someone Who knows you guys..I'm praying for Abby as she goes through surgery today! from all these stories, she has really inspired me! What a strong, positive girl she is (: