Heart Defects

DS  is 7 years post Ross Procedure and now 19 years old!

Reaching 19 was always our goal for him.  We had hoped we would be able to postpone the surgery until he was 19 so they could replace the aortic valve without having to use his own pulmonary valve for a replacement but it didn’t work out that way.  It does appear both the autograft and homograft might have to be replaced at some time but we’re still hoping to avoid surgery on both sides of the heart again..  It had never occurred to me that at 19 he would be responsible for his own health care decisions.  Now my challenge is getting him to take his health seriously enough to keep his appointments without becoming discouraged or shutting me out completely.  He currently enjoys riding this dirt bike and going solo camping, he’s always enjoyed nature. 

It’s ironic that before his surgery no one, especially the PE coaches, gave any consideration to his condition even though he had a doctor’s note saying that he must be able to pace himself.  After having the surgery they finally started taking notice, because he had a scar, and then over compensated by not letting him participate at all. His surgery wasn’t postponed because he did not have a severe problem but because the procedure to relieve the immediate risk caused further complications.  He felt he was being discriminated against because he was forced to set out completely. He enjoyed playing basketball and other games for fun he just couldn’t do the drills the coaches insisted on.  He was much more at risk before the surgery then after it.

We never managed to get any constructive effort from the school after the PE incident that sent him to surgery.  When I met with the High School Counselor and Assistant Principal at the High School with the recommendations a doctor had made for his learning differences they sat across the table from my son and I and mocked us (I don’t know of any job in the private sector that would tolerate such disrespect to a customer).  I got a judge to issue a court order to take him out of school to complete his GED early.  With the help of a tutor twice a week he managed to learn in 4 months everything he hadn’t learned in 4 years of school and passed his GED exam on the first attempt.

My youngest grandson had a small VSD but it closed up without any intervention.  The kids waited a year to get the echo done so it would be covered by insurance and by then the VSD had closed up.  He is so cute,  he’s a stocky little guy and walks on the tip of his toes.  When he gets outside or into an open space he takes off running, he just loves to run.  His Dad played sports and I’m sure they’re all looking forward to him playing also.  I’m glad this resolved for them so quickly.

Shirley

The Woodlands, Texas

Hi Shirley.  I am so glad you posted.  When I first started reading this post, I thought about Brian and then it ended up that it was you posting.  Please send me your email address again.  Mine is cherir1@peoplepc.com I've added more grandkids since I last talked to you.  My youngest grandson turned 2 last week.  Nick is now 13.  I also have a granddaughter who is 13, a grandson who will be 13 in January, an 8 year old granddaughter and a 5 year old grandson.  Needless to say I am busy :)  The youngest one is huge.  He's already 40 pounds and is 39 1/2 inches tall.  His older brother is the one who will be 13 in January and he is already 6 feet tall. 

Nick is doing well.  He still has to go to TCH for check-ups and an echo every 6 months.  We were warned that the teen years might be a time when his mitral valve leak acts up.  He takes a hefty dose of enalapril every day and so far it is doing the job.  You were talking about your son being responsible for his health care decisions now and it reminds me that in a few years, we will be in a similar situation with Nick.  You know, I think he was more responsible about taking his meds when he was 6 than he is now.  He went to Camp YOLO this fall and we were surprised that the kids' meds weren't turned in to one person beforehand like they did at Camp Pump It Up.  They said it is because YOLO is a teen camp and they want the kids to take responsibility for their meds.  Of course, they still had prompting from the counselors to make sure they did what they were supposed to.

Again, it was so good to see your post.  Take care.

Cheri

                                  Cheri

                    go to Heart Defect Information   

                           go to Nicholas' Website

                      contact me - cherir1@peoplepc.com      

   

                                  

            

               

            

                               

 

                                                

Are the heart camps sponsored by the pharmaceutical companies?

I’m wondering why Brian was never invited to one of the camps, he’s been a patient at TCH since he was a newborn and I’ve never heard of the camps except from you.  Only difference I can think of is that his condition was managed by behavioral modifications (not playing competitive sports) instead of by medications.  Since his Ross Procedure he has only had to take daily aspirin.