Tag Archives: Tetralogy of Fallot

2012 Annual Appointment

We had Jake’s annual appt on Feb 20th. Dr. Hougen continues to be one of the best doctors we have ever had. There was no need for an EKG, this year, but he did do an echo. He and Jake talked baseball during the proceduire. As a mom, it is so wonderful to see your child having a grown up, intelligent conversation with another adult. I’ve seen so many kids at this age who can barely make eye contact with adults, so it always makes me proud of him. But in this context, it brings tears to my eyes because I am so aware of what a miracle it is that he is even with us today.

Dr. Hougen once again praised the surgeon who did the repair. Last year, we were told that the ASD had close completely. This year, he said that the VSD had also closed. Dr. Teodori had left the holes slightly open at the repair because they were afraid that Jake’s tiny heart could not have handled the pressure of closing them. We have no way of knowing what would have happened if they had closed them completely, but in my heart, I know that it was the right decision. At the time, Dr. Teodori said that they would likely close on their own, but if not, he could live with it. Now, 11 years later, my son no longer has a hole in his heart.

Dr. Hougen explained the echo to Jake, who was very interested in the mixing of the blood that occurs because of the leakage that still exists due to his compromises pulmonary valve. The leakage causes his right heart to have to work a little harder, so monitoring that leak and the condition of the muscle is the main concern at this point. The possibility of replacing his valve is still there. I remember the 13 year old girl that we met at the hospital when Jake was having his repair. She had TOF as well and had her valve replaced the same day as Jake’s repair. We ran into her at the cardiologist’s office a few weeks later and she was doing great. She would be about 24 or 25 now. I often wonder how she is doing and I wish I could tell her how much peace and hope it has given me through the years to have met her. She and her family were truly a gift from God.

I pray that Jake’s story can provide that same kind of hope to parents who are just starting out on this journey. Yes, I would change it if I could…of course I would. But, I am so grateful for the amazing person that he is and the joy that he has brought to the lives of people who know and love him. And I know that our experiences shape who we are….so in that sense I can say that I’m at peace with the way things are.

So our orders were to keep living life with no activity restrictions and to come back in a year. Dr. Hougen and Jake are looking forward to talking about the 2012 baseball season at his appointment next February.

And with that, we are off to Florida to catch a couple of spring training games…just living life as prescribed. And, life is good.

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Jake’s story

William Jacob Brown – “Jake” was born on September 17, 1999. He was 7 weeks premature, but otherwise healthy….or so we thought until September 20. It was then that we discovered Jake had a congenital heart defect called Tetralogy of Fallot (TOF).

Our world crumbled that day. We didn’t know why this had happened or if Jake would even survive. We vowed that we would do whatever we had to do in order for Jake to live a normal life.  But getting there meant we had some hurdles to clear.

We are not doctors or medical professionals.  We are simply parents who have been there.  We hope this blog will help give hope to other parents who are just starting the journey. 

Jake is now a normal, active and relatively healthy 17 year old.  He currently has no activity restrictions and is a wrestler at his high school and is  working on his 1st degree blackbelt in karate.  

 

jake
The Chosen One
I had a dream the other night,
It came to me so clear.
I stood before the throne of God,
afraid to come too near.
God said to me “I hear your prayers,
there’s answers you can’t find.
I asked you here to talk to me
and help to ease your mind”
I said “Well yes God, I am disturbed
about my special one.
That punishment is awfully harsh.
Whatever have I done?”
God looked at me and shook his head
and said “You’ve got it wrong.
I sent this special child to you
because you are so strong”
“I searched and searched to try and find
someone with love so rare.
A parent so unselfish they could
give that special care.
I try and save my special gifts
like those your speaking of
for special kinds of parents
I call the chosen ones”
Of all the ones to choose from,
I think this I have done.
A parent who deserves my best,
an honor you have won.
–Author Unknown
 
 
 
 
 
 

 

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