Wednesday, July 20, 2011

Mild rejection, but it's nothing to worry about (or so they say.....)

Wow, what a day.  It just seems like when I get used to what's going on around here, something else is thrown our way!  It's hard for me not to worry when I hear anything from the doctors that involve the word "rejection!"  They said the biopsy showed that it is just a mild rejection, and we truly shouldn't be worried.  We just need to watch it and get another biopsy next week, on Tuesday, and hope that things look better by then.  I figure that since they still think we will be able to go home by Friday, it must not be too serious.  All of her cath levels looked really good though.    We also had a little scare today when we went for a walk and Abby suddenly started feeling pain (she rated it a 6!! she's never said more than a 1.5).  At first she said it was her chest tubes, but then she decided it was in her back.  They sent all the docs up to check her out and then did another chest xray, her 2nd one of the day.  They aren't sure what it was, but it was bad enough for Abby to cry, I've only seen her cry once through all of this, can you believe that??  They said that sometimes you can get a little air pocket that comes in through the chest tubes and it can settle in the back of her shoulders, this was a possibility.  We just have to keep watching her and see if it goes away, she does feel much better tonight.  Just another thing to worry about.  She's still got some troubles with her right lung too, we just can't get it cleaned out and fully expanded.....this means she'll be staying on her oxygen for a little while longer, we're not sure how long.

The most stressful part of the day was when they came and started teaching me about recovery.  It was the pharmacy team and they came to teach me about all of Ab's meds and the side effects, and how and when to take them, and how important it is that we follow the instructions so closely.  I've had some requests from people asking about what meds she'll be on, so for those of you that are interested, here's the list:  Prograff, cellcept, prednisolone - all anti-rejection meds, valcyte-prevents viral infections, nystatin-prevents fungal infections, septra-prevents bacterial infections, aspirin-prevents blood clots, lasix-water pill, Lansoprazole-prevents stomach ulcers, pravastatin-lower cholesterol and stabilizes heart, lisinopril-controls blood pressure, amlodipine besylate-helps lungs and blood pressure, magnesium oxide-nutritional supplement, tums-calcium, and cholecalciferol-promotes bone health.  This totals to 43 pills/day and 4 mouth swishes.  it's a lot to think about and worry about.  There are a lot of possible side effects, and we have to be as exact as possible.  They will eventually taper off, but some of them she'll be on for the rest of her life.  I think the first time I go to the pharmacy, on Friday, I will probably need a heart transplant when I see how many there are and the bill!!!  The cost is just overwhelming, I'm not sure how we'll pay each month, but I just have to believe that it will work out.  Just another reason I need to be home and teaching by November 1st, I can't let my insurance lapse.  This little meeting gave me a lot to worry about, I will have a huge responsibility and I can't screw it up.  Sometimes all of this medical stuff is just so tiring for me, not what I would choose to be thinking about, but I better get used to it.

The good news today was that Brock and my mom and dad are back in town.  It will be so good to have all of my kids here for a few days at least.  Then Britt and Brock both have to go back to St. George on Monday.  I do have a hard time with this part of our whole situation, it never gets easy, and in fact, it's going to get harder once school starts, we'll just have to make the most of the time we do have together.    Another cool thing is that Dr. Kaza, our surgeon, came by and told us he's going to take us to the lab and let us see Abby's old, messed-up heart tomorrow!!!  Abby is so excited.  We will take pics for sure.  I will probably get grossed out again, but I'm going to try to look at it, and I promise I won't throw it at the wall too hard!!!  One funny thing, when we gave him a Team Doman shirt, he said the cooler that actually carried Abby's new heart, looked just like the one on the shirt, it was even red!!!  He thought that was pretty cool.  We're also having a "care meeting"  tomorrow with all of Abby's doctors.  We will learn more about how she is doing and what we do from here.  Maybe we will get a rough timeline of what happens next.  The other good part of today was Abby's channel 2 news story, I thought she did great and they did an excellent job putting the story together.  I was going to link it to the blog but I couldn't find in on the 2 news website, so if any of you know where it is, please add a link to your comment, I will keep looking too.  Also, if any of you saved the articles from the Spectrum last week, we would love a copy, we only got  a copy of the first day. 

I know it sounds like I'm complaining, and I know I shouldn't be.....I should just be grateful, and I am..... we have so much to be thankful for, but sometimes things are still hard.  Most of the time we are just content to be where we are right now, we know how easy we've had it through all of this, things have just worked out perfectly for us and we don't forget this,'s too awesome to forget; But, we still have lots of things to worry about too.  Right now it just feels like we'll always have a hurdle to cross, there will always be something else to worry about, so I just better accept this and make it my new normal.


  1. It is not complaining, it is problem solving out loud so your brain can hear/see it and figure things out. That is a bucket of meeds--good gravy. Will Britt and Brock need a ride home? We are coming up sat. but we will visit on Sunday for several hours--just long enough for the kiddos to play FIFA. Abs says she is gonna kill Dan in FIFA.

  2. I hope you don't mind that I keep leaving my thoughts with you. I'm so happy Abby has a release date. You always heal better at home. The meds can be very overwhelming at first. I cried when they showed me everything I had to take. But it soon becomes routine and normal. I had a mild rejection early too. My doc explained that in a way a mild rejection gives them an idea of how much dosage to give. They certainly don't want to over-medicate either. I still marvel at the technology that allows all this and feel blessed to live in this time that this is possible. Prayers are with your family and Abby for a quick recovery so you can be reunited with your family.