When writing this blog, I try, for the most part, to keep my emotions at bay… I try to stick with the facts so those of you that care about Katelyn and our family can know whats going on without being bombarded by all of the intense feelings that we experience. With that being said, I am warning you all, this is my emotional post…
We have no idea what the future holds for our sweet Katelyn. We do know, though, that we won’t take a single day with her for granted.
When her doctors were preparing us for her being listed for the transplant, they told us, “A transplant isn’t a cure, its trading one disease for another.”
There are many complications that come with being a heart transplant patient. First is rejection, which can come at any time. The doctors check for this regularly and have ways to treat it at the first sign.There are symptoms that we will be watching for at home too, always on guard.
Next, infection is a constant concern. She will never have an immune system; these first three months are the scariest when it comes to infection, but she will have to be so careful for the rest of her life. The slightest infection could be life threatening or result in lengthy hospital stays. She cannot have any live vaccines (for example the chicken pox vaccine) because she would contract the illness from the vaccine so its not even something we can fully prevent. Germs are the enemy! I joke with Andrew, and tell him we might as well buy stock in Lysol.
Then, there is transplant specific coronary artery disease, doctors aren’t sure exactly what causes it, but it happens. On average heart transplant patients need a new heart again after about 10 years… In fact I met a young man yesterday who was 22 years old and on his 3rd transplant. He has had 4 different hearts beating in his chest in a mere 22 years, its just insane. We hope and pray that as medicine evolves over the coming years, doctors will find a cure for this before Katelyn develops it.
Lastly there is actually a type of cancer that transplant patients can get… as if they haven’t been through enough. I can’t think of the name of it right now, the lights are out since the kids are sleeping, or I would get my handy dandy transplant manual and look it up, but suppresing their immune system makes them more vulnerable to cancer.
So you can see why we are so thankful for the continued prayers for our baby girl. We need them!
She is laying on the bed next to me, and as I hear her precious little snore, and see her pretty face partially lit up by the glow of my laptop, I am reminded of a story that someone shared with me just a few days ago. A story that literally made tears stream down my face. It’s called Welcome to Holland, and this is a copy/paste from the author’s website:
WELCOME TO HOLLAND
Emily Perl Kingsley.
c1987 by Emily Perl Kingsley. All rights reserved
I am often asked to describe the experience of raising a child with a disability – to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It’s like this……
When you’re going to have a baby, it’s like planning a fabulous vacation trip – to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It’s all very exciting.
After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, “Welcome to Holland.”
“Holland?!?” you say. “What do you mean Holland?? I signed up for Italy! I’m supposed to be in Italy. All my life I’ve dreamed of going to Italy.”
But there’s been a change in the flight plan. They’ve landed in Holland and there you must stay.
The important thing is that they haven’t taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It’s just a different place.
So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.
It’s just a different place. It’s slower-paced than Italy, less flashy than Italy. But after you’ve been there for a while and you catch your breath, you look around…. and you begin to notice that Holland has windmills….and Holland has tulips. Holland even has Rembrandts.
But everyone you know is busy coming and going from Italy… and they’re all bragging about what a wonderful time they had there. And for the rest of your life, you will say “Yes, that’s where I was supposed to go. That’s what I had planned.”
And the pain of that will never, ever, ever, ever go away… because the loss of that dream is a very very significant loss.
But… if you spend your life mourning the fact that you didn’t get to Italy, you may never be free to enjoy the very special, the very lovely things … about Holland
Andrew and I are ready to take Holland head on, heck we will even wear the wooden shoes! We feel so blessed that God gave us such a special child. A child who has touched the hearts of so many people in such a short time. We are excited to see what He has in store for Katelyn’s life, a life we know will be full of love, a life that we are honored to share.