Abby has now been listed on the heart transplant list for 1 month. I'm tired, and I know Abby will wake up and be tired too. She had a rough night with her restless legs, they just twitch every time she starts to fall asleep. We tried the bath before bed, the stretching, the massage......everything but the meds, but no luck. I guess it's time we switch to some meds for it. The problem is that they recommended 3 different things, and they all have their own set of problems:
1. vitamins with iron in them-the problem with this is that they contain Vitamin K which is going to affect her INR which we finally just got stable
2. Some med for restless legs but I can't remember the name. They said the problem with this is that is will probably get a lot worse before it gets any better. I don't know if we can handle a lot worse, last night was pretty bad!!
3. An anti-anxiety med. With this they are worried it will make her too drowsy. So drowsy that it might mask if she's having a hard time breathing. This wouldn't be good.
So, we're a little bit stuck. I will bring up my concerns in clinic on Monday. Somehow we've got to get some sleep around here. It's hard enough to cope with everything when we're sleeping, but everything seems even worse when we're tired.
My highlight of yesterday was when we got to out to lunch with a heart transplant recipient and her mom. Thanks DeeDee for setting this up!! Shauntelle and her daughter Kaidence are amazing people. I was able to hear all about her incredible story and how they survived it! They have been through so much....It makes what I'm going through seem easy. If you want to read her story, go to http://www.4mykaidence.blogspot.com/ Go back to the very beginning and read it from the start, you will be in awe of her strength. She's also listed blog addresses for many other "heart kids" as they're called. I'm officially a "heart mom" now too! It was so good for me to listen to Shauntelle's advice for me on how to handle all of this, and to once again let me know that the feelings I'm having are normal.....I'm really not turning into a freak, really!!! 3 things really stood out to me, which are things that Paul also told us are:
1-The doctor's paint the bleakest picture. Don't worry about the statistictics they tell us, don't worry about the prognosis- things will probably be much better than they say. It doesn't mean we don't have a rough road ahead of us, we do, but it will be better than what they say.
2-There is so much good that is coming from this, let that sustain us. It doesn't make all of this okay, but we need to realize the impact we can have on the lives of so many people. They both said that they if they could go back and not have had to go through all their struggles...they wouldn't. They wouldn't take away what they've gone through because it changed the lives of so many other people. I pray that we can bring as much good from this as possible. I want our struggles to inspire and help as many people as we can. The more good that can come from this horrible trial we're going through, the better. Help me to know how to bring about that goodness!
3. Focus on the tender mercies and really pay attention to the Lord's hand in our daily lives. I have been noticing this, it's impossible not to. Little things happen every day, and they aren't coincidences. For example, when DeeDee emailed Shauntelle and asked her if she would spend some time with me and started telling her our story, Shauntelle said that she had heard a little about us and had just been trying to find a way to contact me so we could get together, but she wasn't able to. Just a coincidence that DeeDee chose to email her on that day?? I don't think so. There are little tender mercies all of the time, we just need to be watching to notice.
The whole conversation we had was perfect, there are many thing that were said that are going to help me through Abby's transplant and her life after transplant too. I know that we will stay in touch, it was one of those instant friendships. Thanks Shauntelle for helping me.
I think Abby is still doing okay. She seems to be a little more tired this week, maybe from being up at night, I'm not sure. She's had a few more headaches and sometimes just doesn't feel good, but I think she's okay. We'll find out more on Monday. Thanks for reading the blog and staying with us, it just gives me a sense of security to know people are still out there thinking about us and praying for us. Thank you for all of your messages and phone calls, they really do keep us going! We still have people stopping by almost every day, thanks for taking your time to see us, it makes a difference.