Tuesday, April 22, 2008

Doctor's Report

Yesterday, we made the drive down to Seattle's Children's Hospital. I got to see my favorite echocardiologist, J, who has a little boy also named Dylan. His Dylan also has Down syndrome and is only a month or so older than me. We LOVE seeing J and to hear about all the cool things his Dylan is doing.

But we weren't there on a social visit....well, anytime is a social visit for me, but I did have to see about my heart. I wish we had good news to report but we don't. My heart is getting worse. The mitral valve is leaking more and more. In fact, it has gotten worse enough that the doctor has decided that medications would not be enough and I need to have open-heart surgery again.

Surgery will not be for a while. Since I am not showing any symptoms, we will keep monitoring things. When I start to experience problems, that is when I will start seeing about a surgery date. These symptoms will include an enlarged heart, difficulty breathing or rapid breathing, bluish tinge to my lips and skin, and exhaustion. When these start to present themselves, we don't know. It could be a year from now, it could be five years from now.

There are some complications with waiting too long so Mommy discussed being more proactive in my care. She is pushing to make sure that if symptoms start, we fix things fast. The biggest concern with waiting too long is that they will wait for the heart surgery and then find that there is too much scar tissue to make a repair. Ultimately, this would effect the quality of my life and shorten my life span significantly. So it sounds weird that Mommy doesn't want to wait for heart surgery too long...but now you can see why she really is pushing to be aggressive in my treatment. The doctors do not want to rush a surgery due to the risks involved. Mainly death. Between Mommy's push and the doctor's caution, we should see some well-balanced care.

We wish we had a better report for you. It was not the news we wanted to hear. But the good news is that there are some really pretty nurses that love to see me. I'm in flirt-city down at the hospital so you can bet I'll make the best of things.

Hey, ladies....

7 comments:

Carolyn said...

Dylan, I'm saying extra prayers for you (and entire family). Now about the flirting, You Go Dylan !!
Love you,
Carolyn in WV

Ang said...

Mr. Dylan, I'd give you my heart if I could. You're an incredible young man who has taught me so much in the two short years I've known you. I can remember the first time we met that your smile tugged at my heart so much so. And I wish now there was something other than prayer that I could do for you. But for now I'll keep in you in my heart, thoughts, and prayers..hugs to you and please give your mommy a hug for me.

RK said...

I'm sorry to hear you're going to have to go through surgery again, but it sounds like you've got lots of good care between your Mommy and the doctors. I'm glad you're not having any symptoms yet, but I'm with Mommy, I'd want to take care of it BEFORE the symptoms, too.

Eva and her 'rents said...

We are thinking about you all and sending healing and strength your way.

Britta said...

Hi,
It's Britta from Arizona not sure if you remember me. Wish there was better news at your appointment, I'm sorry. It has been great reading about all of Dylan's great progress and I am looking forward to much more!!!! You're in my thoughts and prayers.
Britta

Mary said...

Dylan, You and Mommy hang in there and take one day at a time. You, Mommy and the doctors are a remarkable team. I have such respect for your mother and the amazing way she gets everything accomplished.

Hugs and prayers for you and your family.

Jayna Bean said...

Oh goodness...I'm so sorry to hear this news. However, I know how strong your mother is Dylan, and you are a luck man to have such a fighter in your corner. With love.