Happy 4th of July everyone! Last year, on this day, Brittany and Brock were chilling in Hawaii, and Abby and I were at PCMC. We got her all ready and unhooked from the wall (which was a major feat because she wasn't doing so great at that time) and walked out to the patio to watch the fireworks. We got all situated, visited with some friends for a few minutes, and sat down to relax before the show started. The first firework went off, and so did Abby's IV cart. One of her infusions had ended! We had to turn around and go back inside to get it going again, and we missed all of the fireworks. What a bummer!!! This year, we're going to Cedar City for the Shakespeare Festival, we have tickets to Les Miserable, our family favorite!! Wow, what a difference a year can make.
We were so nervous for clinic last Monday, so nervous that when they took Abby's blood pressure it was higher than it had been in a long time! But overall, things looked good. One interesting thing is that last Friday, my girls and I spent the day up Kolob Canyon for our ward's girls' camp. We had only been there for a couple of hours when Abby's feet starting aching again, we took her shoes off and saw that her feet, ankles, and legs had swollen up again! Abby's cankles had returned, this same thing happened back in September. When Dr. E walked into our clinic room, the first thing that she said was that she could see from Abby's echo that her pulmonary hypertension was back, this is what causes the swelling. We have been treating this with a medication, and after talking at clinic, we decided that Abby will probably always have to take this medication, possibly for the rest of her life. Sometimes, when people have this, it goes away, but with Abby, it just might not. Dr. E said that because Abby's initial heart defect was so rare, there are a going to be things with Abby that we just aren't going to know the long-term effects. It's not like we can just go to a book and read about it, and this just happens to be one of those things. Luckily, the swelling went down the next day, so it was only painful while we were at the high elevation. One option is for Abby to take oxygen with her when we travel to the mountains, or maybe double up on her medication. It's something we will just have to deal with. Abby's magnesium level was also really low, which is weird, she's been taking the same dose of magnesium since transplant, and her prograff level (this is a level that goes with her anti-rejection medication, we need it to be in a certain range so her risk for infection isn't too high, but so she won't reject her heart either) was also low. So we are adjusting her levels and we'll go in for one more lab draw on Friday before our trip and hope that they are back where they are supposed to be. Abby is still experiencing lots of dizziness when she goes from sitting to standing too, we're not sure about this, but we don't want to adjust any of her other medications until after our trip, we don't want to mess with anything right now! So, a few minor glitches, but overall things look good and we got the okay for our trip. What a total relief! One of the greatest things about clinic was that we had to stop by the pharmacy after to pick up a couple of things, and what did I find?????
That's right, mini bottles of Avagard! I had never seen any before, but they are the perfect size. Sorry all of you other heart moms, but I bought all that they had on the shelf. I'm sorry, but this is an obsession of mine and I couldn't help it. I know they probably have more in the back, and I won't be there to buy any more for almost a month! Not only that, but they fit in perfectly with my collection, and this doesn't even show the bottles that I took to school for my classroom! My name is Michelle Doman and I'm an Avagard hoarder.
After clinic we stopped by the Make-A-Wish building to talk about our finalized trip plans! I didn't realize this, but our wish grantor, Pat, told me that she was so relieved that Abby is finally getting her wish because she's been working on it for over a year! I didn't remember this, but she said that we were supposed to meet together to decide on Abby's wish last year on July 12th! Pat said she called me that day to see if we were ready for the meeting and I told her we couldn't make it because Abby was in surgery getting her heart! She said she just sat down and bawled. I'll tell you what made me bawl.....just seeing how many of you were excited for us when we got the okay to go. It reminded me that we have so many people that have been right here with us throughout this whole journey, I think some of you are almost as excited as we are! We now only have to wait about 3 more days!!! One thing, we aren't staying at the Give Kids the World Village, because my kids are older, we get to stay right in Disneyworld, at the Polynesian Resort, and it looks awesome! I'm actually really excited for this, I think it will be even better, we just hop on the monorail from our hotel and go into the park. We are all so excited, my kids talk about it every day, we are ready! Many of you have requested pictures, so I will blog and post pictures during our trip, but mostly, we are just going to enjoy ourselves and not worry about anything medical. I have put Abby on house arrest until we leave, we are not going to risk her getting sick now, no way!!!
There was an excellent article in the St. George Spectrum this week, David Demille did an amazing job once again! If you didn't get to read it, just click here: " Abby in The Spectrum"
I love how he didn't only talk about Abby and Pay it Forward, but he talked about organ donation and CHD's as well. Abby will also be on The Mormon Times this Sunday, KSL, at 10:00 am. We won't be home to watch it :) so let us know how it goes! KSL news is also doing a feature story on Sunday, I'm not sure all of the details yet, but it will probably be Sunday night.
We are thrilled with the response we've gotten for Pay it Forward for Abby. We heard of people that have offered to feed the missionaries, offered free house cleaning and lawn mowing for the day, one person said they are going to go to a bunch of drive thrus in St. George on that day and pay for the car behind them in hopes that they will pass it along, one friend told me that wrote a letter apologizing for something they did that they never apologized for, and many more things. We love it, it's our hope that somehow this reaches Abby's donor family and that someone helps them on this day that they lost a loved one. This is what we've been getting ready to pass out in Florida, if we have any left anyway, we just can't wait:
I hope you plan something great that day as well! Thank you to all of you that have been spreading the word by sharing the link to the Spectrum story, sharing the Pay it Forward for Abby facebook page, and just talking about it. What a great way to show your gratitude for life.
This is a long post I know, I always have a lot to say, it's a good thing that blog reading is optional, if you don't want to read it all, you don't have to! There's one final thing that we had to share with you. This is a message that Britt and Brock sent up to the transplant team when we went to clinic on Monday. It's funny, they got a good laugh out of it, and it worked, Abby is finally able to get her wish vacation!