Monday, August 15, 2011

Where are we now?

Logan's mommy, Stefenie is hosting another blog linking event for heart families who would like to share their stories and connect with other families. The previous one, hosted about a year ago was a huge successful. we all had the opportunity to read about our heroes, both kids and adults who are living with CHD and overcoming great challenges every day. To contribute this year I would like to start where I left off last year. If you would like to read about Bilal's CHD journey from the beginning you can click on this link. This will take you to my contribution from last year.

As I have mentioned in previous posts, Bilal has Tetralogy of Fallot, which typically comprises four separate defects:
1. Pulmonary stenosis
2. Ventricular septal defect (Bilal also had an atrial septal defect)
3. Right ventricular hypertrophy
4. Overriding of the aorta.

I have shared a some diagrams before, but these are particularly useful in describing the complex CHD.

Bilal's complete repair was on September 18, 2006, nearly 5 years ago.

Since the last time I posted we have been back to see the cardiologist once, in February of this year. The news we received this year was the most encouraging we have so far since his repair. During our follow-ups we have been hearing the fact that Bilal will probably/likely need a valve replacement some time during adulthood. As with most repairs of Tetralogy of Fallot the pulmonary valve is often sacrificed to some degree to relieve the stenosis, so patients are left with residual pulmonary insufficiency, or a leaky valve. The backflow of blood into the ventricle can put a strain on the heart, and may warrant a valve replacement. Depending on how the repair as initially done this may require another open heart surgery, or possibly a cardiac catheterization.

When we saw our PC in February he was very happy with how Bilal's heart anatomy had developed. He actually told us that a valve replacement in the future is possible, not probable. To us that is a huge difference. What a blessing it would be to not require any future heart surgery! And for now we will continue to see Dr. C every 18-24 months for his regular check ups, during which he typically gets a height and weight check, oxygen saturation (99% at last visit, woohoo!), chest x-ray, EKG and echocardiogram. I am determined to push it to 24 months this time!

Meanwhile we have a happy, well-adjusted five year old, who just started kindergarten last week (and is loving it), and is about to start his second season of soccer. He can keep up with the most energetic heart healthy child, and drives his older siblings absolutely crazy. Still into his apparently never-ending Star Wars phase, which drives Mama crazy, and is on the go from six in the morning until almost eight at night. We couldn't have been more blessed!

From his most recent cardiology check-up. Such a big boy!

I hope my son's amazing post-op outcome is a source of inspiration for those parents who may be dealing with the uncertainty of a new diagnosis. I am always happy to talk to or email with anyone who needs a chat and a bit of support, just let me know ♥


Stefenie said...

Bilal sure is growing up. Wow!! Can't believe he started kindergarten too. Glad he likes it!!

Thanks for joining my blog linking event!

Shannon said...

Bilal has gotten so big! And such an inspiration! :)

Amyacl said...

Hooray Bilal! It's always great to hear how well he is doing!

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