June 5th-INR too high......again!!

wow, it's already been a full day! It all started off right when I got up and went for a run in our beautiful new neighborhood, but then we had an appointment with the cardiologist and transplant team and we had to get another Coumadin test as well. I thought we'd be there for about an hour, in and out, no sweat.....Wrong! 3 hours later we were out the door, but they almost admitted Abby again! The doctors said everything was stable, her lungs and heart sounded the same, and her vitals looked good. They're a little concerned with her weight loss, she never really liked to eat, but now she really doesn't like to eat and has lost about 8 pounds since this all happened. We have to keep track of her calorie intake for the next few days, and if things don't change, they'll put a feeding tube in. I know Abby doesn't want this, so she's going to try to do better. I wish I had this problem! The main cardiologist, Dr. Everitt, is the best. She gave us a whole lesson on the heart and Abby's condition. We looked at Abby's echocardiogram and compared it with Brock's. I couldn't believe how thick the walls of her heart are compared to the regular, about 8 times as thick! They also call one of her problems a "mickey mouse heart" because the Atriu on the top of her heart are so enlarged, it looks like mickey mouse. It's amazing this heart worked for as long as it did. While we were waiting for the doctor, one of the lifeskills people came in and put Abby on a really cool website that allowed her to perform a heart transplant-if you get a minute, you should go there. It's on pbs.org-just search "heart transplant." Then scroll down to Nova online:electric heart....... It only takes about five minutes but you can learn a lot. It actually made me really sick to watch, I had to go away, just thinking that this will be happening to my little girl was a little too much for me. They spent lots of time explaining to Abby about that day and what will happen, and then what to expect after she wakes up too. It's a lot to take in, but Abby was fine with it.....just not me, I feel more and more like a whimp every day. Then they pulled the tape off of her defibrillator scar, it looks so much better, we'll post pics soon. Then the bad news....we got her INR levels tested again, and it was a 5.2, way too high. This is when they were deciding whether or not to admit Abby again, and I was having a little anxiety attack. Luckily they decided to send us home with a new dose of Coumadin and instructions for Abby to eat lots of broccoli and to take it easy for the day. I don't know how well I would've handled being admitted to PCMC again, it very easily could have put me over the edge, I'm pretty close already! So for now, we just have to go back and be tested again on Friday, then go back to the cardiologist on Monday. Not very much fun, in fact it really is crappy, I'm getting tired of all this stuff.....and to think that we've only been doing it for less than 3 weeks??? I don't even know how that can be possible, it honestly feels like it's been 2 months since this all happened. Time is moving so slowly, way too slowly, it's crazy.

We went to our new ward yesterday, but left right when it ended because I was noticing everybody coughing and sneezing....we just felt like we should get Abby out of there. If she gets sick, they could take her off the transplant list. So, I was anti-social, which isn't like me. We spent time with both of my brothers and their families- we're glad they're here, played some games, finished putting things away, and just hung out. Brock went and played bball with some kids in the neighborhood, that didn't take long, and he had a blast! That was good. Abby did get invited to go visit an alpaca farm one day this week, she can't wait, they said they have a bunch of baby alpacas there right now. When she's feeling better we're going to go. We still haven't made the zoo, but possibly tomorrow, and we're going to a party tonight in the neighborhood that I grew up in, it will be fun to see everyone again, I better cheer up before then though.

Couldn't believe the call from Ali today about how much money she deposited into Southwest Federal Credit Union......almost $3,000 just from the school. We are so blessed, I don't even know what to say, just thank you. It will be needed. I know it's weird, but in some ways we feel like the luckiest people in the world right now. Thank you everyone, just know that we are constantly thinking about and appreciating what you've done for us. It's hard to express the gratitude we feel, I'm not even sure how to, but know it's there; We are extremely grateful and feel taken care of. Remember, Friday night at 10:00 on KSL, and if Abby is still feeling good, I'll be coming to St. George just for Saturday to attend the yard sale and the football game, and to clean some things out of my house. Abby will be staying with my parents that day. Maybe I'll have the chance to thank some of you in person. Don't forget to be sending us emails, messages, texts, and coming to visit. We need it still, maybe now even more than before....and keep praying for that heart!!!!