|Wide awake and driving to Primary Children's.|
|Check in at the surgery desk. There are always so many kids in the waiting room that we wait in the hall.|
|Abby sporting her hospital digs, looking hot!|
|We always have to wait an hour and a half before they take Abby to the cath lab, so after they take her weight and height and take her vitals, she always asks for warm blankets and then falls asleep while we're waiting.|
The doctor that's performing the biopsy usually walks upstairs to our waiting room and talks to us before walking us down to the cath lab. We thought it was going to be Dr. Gray today, but we were surprised when Dr. Martin walked in instead. Abby had never had Dr. Martin before, but we loved her from the start! Right when she came into Abby's room, we loved her! She knew everything about Abby and knew exactly what to say to ease our nerves a little bit. We walked down to the cath lab together, and as soon as Abby walked in, all of the cath nurses were so excited to see her! They love Abby down there, they've really gotten to know us and we always spend a few minutes chatting with them before I have to give Abby her kiss and hug and leave her (this is the worst part of the entire process! I hate it). Abby always get to choose what flavor of gas to have as she's going to sleep, but today they chose pineapple for her to remind her of our trip to Hawaii! Hopefully she was thinking about the beach as she was drifting off.
I walked down to the waiting room, and was so thankful to see my heart mom friend Shauntelle waiting for me! Even though I told her not to come because she already spends so much time at that hospital, she came anyway, and I was grateful. Abby's biopsy was supposed to take 90 minutes, and that's a long time to sit alone worrying. Shauntelle helped make the time pass so much more quickly. We definitely didn't run out of things to talk about! No only that, but she also brought the much needed chocolate and diet coke. Thanks for being there Shauntelle, that meant a lot to me! Have I ever said how much I love my heart mom friends??? They are the greatest!
|My hero for the day!|
When the pager went off saying that Abby was done, was when I really got nervous. As soon as I hear the pager, I have to walk down to the cath lab to meet the doctor to go over what they found. Dr. Martin sat down with me and showed me the pictures and videos of Abby's heart and how amazing her coronary arteries look! There is absolutely no narrowing, they are perfect. Abby's heart pressures were all the same as her last cath too, this was a huge relief! I loved how Dr. Marin took the time to really show me and explain everything, she's really good. She said the entire cath/biopsy went perfectly, no problems. Seeing Abby's heart looking so strong is always an amazing thing. I so wish that I we knew Abby's donor family so that we could share the good news. Maybe someday.
The next thing I had to do was to walk upstairs to the waiting room and wait until Abby had waken up enough for me to come back. At the top of the stairs I ran into one of our heart transplant heroes, but I forgot to take a picture, duh! Laura Hofheins received her transplant over 20 years ago and she's still going strong! I loved that I saw her and got to talk to her! She met me because she wanted to buy a book. Thank you Laura! Seeing Laura always gives me so much hope, she's an inspiration to us. Then I ran into another one of my biggest heroes, Dr. Kaza, Abby's transplant surgeon. We love Dr. Kaza, he's one of the greatest men that I've ever met. We've spent a lot of time with Dr. Kaza talking about many things, and he's definitely a person that I look up to. Not only is he brilliant, but he's also very spiritual and so completely caring. From the very beginning he's had a soft spot in his heart for Abby, he always asks the transplant team how she's doing and he makes it a point to see us whenever we are there. We appreciate this man so much, he is incredible. A few weeks ago, I sent him a copy of "Abby's Miracle," and he was so complimentary and so thankful for it. I could tell that he really did read it, he'll always be a hero to us. My next step was the waiting room. Because of all the time we've spent there the past 2 years, I've become friends with ladies at the desk. When I walked in, they were so excited to see me because I hadn't seen them in such a long time. I had brought one of my books to give them, and as soon as they saw it and read the back cover, they were in tears. They insisted on buying it and wouldn't accept it as a gift. It's always touching to see how many people truly know Abby's story and care about her!
I finally got to go down and see Abby in the PACU. Then they told us that she would have to be there, laying flat for 6 hours!! That's a long time, we were expecting only 4 hours. She was extremely drowsy when I saw her, but she said she was feeling good. She got a big smile on her face when I told her the initial results of her cath, and an even bigger smile when I told her that I had seen Dr. Kaza and he was asking how she was. Then the waiting began. I actually got Abby to give a thumbs up even though she was so incredibly tired!
We were excited because we got spend the next 6 hours in our own private room where it was quiet. During her last annual biopsy we didn't get our room and we spent the day listening to a baby right next door crying. It was awful. This was like heaven. Abby stayed awake on and off for the 6 hours and I fed her lots of slushies. I set up my own little office and we had many visitors that knew we were there and wanted to stop in and see us and to buy a book. Thank you to everyone that stopped by and for buying "Abby's Miracle." Every book I sell helps me to try to get caught up on some of Abby's medical bills. The time actually went really fast.
|When she could sit up a little bit, she ordered some food from the cafeteria. I had to go downstairs and get one of their amazing sandwiches for me too!|
I love this picture because even though Abby is sound asleep, she still has her phone in her hands! Typical teenager. I'm glad that Abby slept a lot, it made the time go faster for her too. While we were waiting, the transplant team came up to to talk to us about her lab results. Everything, and I mean EVERYTHING, looked amazing! Her blood counts are up, her kidney function is good, she's not anemic anymore and her BNP, which is a measure of heart failure was only 29. The lower the score, the better. BNP levels below 100 indicate there is no heart failure, and Abby's was all the way down to 29. SWEET! The transplant team was thrilled with everything. I talked to them about possibly taking Abby off a few of her meds, she's still on about 9 prescriptions, but we decided that because everything is where it needs to be, were not going to mess with anything right now. It was good for us to just sit and chat with the transplant team for a while. They're still trying to figure out if Britt and Brock need to have echoes done this year, or if they can wait for 5 years. They're going to do some research and let me know next week. After the transplant team left, Abby had to have an EKG, this was just another part of the annual tests that needed to be run.
Then, finally, it was almost 4:30 and time to go down to clinic to for an echo and a chest x-ray. Abby's echo was done by a lady that had a heart transplant when she was younger. It had been 22 years since her first transplant, and 13 since her second. It was fun for Abby to talk to her and ask her questions while she was getting her echo. She was even asking why she decided to become an echo tech and what was involved. I think Abby loves to talk to other recipients, she always has questions.
Also while she was getting her echo, the transplant team and Dr. Tani came in to tell us that they had already gotten back the biopsy results and that it was "squeaky clean," meaning that it couldn't look better! Best news of the day for sure! Finally, Abby's appointment was over!! But, we still had to make a couple of stops before we were ready to leave. Our first visit was with a family that I had spent a lot of time messaging on Facebook and texting, but that we had never been able to meet. Sara is another transplant friend. She didn't receive her transplant too long ago and was still living away from home and family and trying to recover from her transplant. It was fun to finally be able to meet Sara and her mom and to spend some time just sitting and chatting together. They were so much fun to talk to, it was so comfortable and it felt like we had known each other for a really long time, even though we had just met. We'll definitely keep in touch with them, it's good for Abby to have transplant friends. that she can keep in touch with, and it's good for me to have other moms to talk to as well. It's reassuring to talk to someone that knows what I'm going through, it makes me feel more confident in how I'm handling things and it makes me feel like less of an oddball!
Our last stop was up to the 3rd floor to visit with some of our nurse friends and to meet a little 2-year-old that is patiently waiting for his heart right now. Christopher hasn't been listed for too long, but we're hoping that his heart comes fast! Thank you Holly for buying a book, I hope that by reading our experience, it will make your next few months a little more peaceful! I know this isn't a great picture, Abby will probably kill me when she sees it, but it's the only one I got.
It was now 6:30 and Abby and I were completely beat. I felt so emotionally drained and Abby was physically drained. Her leg wound was sore and we needed some dinner and to go get some rest. Thankfully, we didn't have to drive all the way back to St. George. We stayed with my brother in Lehi for the night and left to come home this morning. I am so lucky that my brothers both live up north, we'd be in trouble if we didn't have someone to stay with up there every time we have to go. What a day! What a long day, but what a good day, it was perfect!!!
While I was driving home this morning, and Abby was sleeping, I had some time to reflect on things. I'm scared to share this out loud, but finally, after 2 years, I feel like things are really going to be okay for a while. Every time I've said that before something has happened, but I don't think it's going to this time, I think it's our time to just "be" for a while. I don't know how long, and I know that something will come up again at some point, that's just how it is when you're living with a child that has a new heart, but for now I'm going to let my guard down a little bit and just relax. Unless something comes up, Abby doesn't have to go back to clinic until September! That's a long time. I also felt so incredibly grateful for so many things. We are so lucky to have the transplant team that we do, they care so much about Abby and truly love her, we couldn't ask for better care anywhere in that hospital. I'm also so grateful for all of you. We had so many people send messages and texts and Facebook posts asking about Abby and letting us know that they were thinking about her and praying for her. It's very humbling to have that happening on your behalf. Thank you, we could feel your prayers. I'm still so in awe about how our past 2 years have played out. Everything has happened just how it was supposed to happen. People have been put in our lives at the exact time we've needed them to be. It's just been perfectly orchestrated. I'm grateful I've had this experience because now I have a story to tell that can hopefully inspire other people and strengthen their faith too. I can finally, honestly say that I am grateful for the events of the past 2 years.
July 12, Abby's second heart anniversary, is coming up fast. It will be time for the 2nd annual Pay It Forward for Abby Day!!! Think back to what you did last year, and start thinking about what more you can do for someone else on July 12th this year!!! You've got about 3 weeks to figure it out. Remember that we want to hear about it again too......post it on our Pay it Forward for Abby Facebook page, email it to us (firstname.lastname@example.org), text it to us, whatever. But be sure you do something for someone else on July 12th to show your support and to Pay It Forward for Abby!!!