Tag: open heart surgery

Happy Heart Month!

It’s funny how quickly life changes and you have no choice but to embrace the change and adapt. When S. was diagnosed with Hypertrophic cardiomyopathy (HCM) last year, we had to do just that. And since he had that experience and is almost on the other side of his recovery, February takes on a new meaning since it is Heart Healthy Month!

Since I’ve mentioned HCM a few times here I thought I would celebrate Heart Healthy Month by sharing some information about the disease.

  • HCM is a genetic disease that affects 1 in 500 people.
  • It is characterized by the thickening of the heart muscle (usually the one that separates the ventricles) blocking air intake causing the heart to work harder.
  • HCM is the leading cause of sudden cardiac death in young adults.
  • Most people with HCM have no symptoms and experience no significant problems. For others, it can cause shortness of breath on exertion, dizziness, fainting, fatigue, and chest pain.
  • For an accurate diagnosis, a physical examination, chest x-ray, electrocardiogram and/or Echocardiography is needed.
  • Treatment can vary depending on the patient – S. is on a beta blocker for the rest of his life, has a defibrillator to regulate his heart rate and had surgery (Myectomy) to ‘shave’ down his heart muscle (which won’t grow back).
  • It is sometimes present at birth, but it most commonly develops in early adulthood. Since it is genetic, there is a 50/50 chance a child will ‘inherit’ it from their parent. Mike will be checked by his pediatrician yearly until adolescent which is when he will go to a cardiologist yearly for checkups.
  • Life post surgery with HCM for S. will be pretty normal, he just needs to watch his diet and exercise – like everyone does!

If you are interested in learning more about HCM or other heart diseases, visit the American Heart Association

And don’t forget to wear red on February 3rd!

 

Where Are They Now?

Each night I lay in bed and think about what I need to do the next day and blogging is always on the top of the list. Then as the day goes on blogging falls closer to the bottom of the list. Life has gone a little sideways recently, but we are meeting those challenges head on. So where are we now?

{S} I have mentioned a few times recently that S. was recently diagnosed with a genetic heart disease called hypertrophic cardiomyopathy which impacts 1 to 500 people. Most people don’t even KNOW they have it but there are a handful that have symptoms like chest pains, shortness of breath and general exhaustion – S. was one of those people. A few weeks ago S. finally had his open heart surgery at Johns Hopkins and they ‘shaved’ down the extra heart muscle that was blocking his oxygen intake.

The surgery went well, but ultimately a few days later it was determined he needed a pacemaker extending our hospital stay and then a lung infection that followed. At the end of the day we were at the hospital of 8 days. Now he is home and recovering for the next few weeks, but is on major restrictions like lifting, driving and movement. He’s being SUCH a trooper, but understandably getting restless. I am going to have some upcoming posts about this soon!

surgery

{Mike} My little preschooler is becoming SUCH a little old man in the cutest way. He is overly polite to everyone we meet by greeting them and being his charming self. He knows Daddy has an owie and he has to be gentle. His favorite thing right now is riding his balance bike and watching Peppa Pig.

He has taken to his new ‘school’ like … Peppa Pig in muddy puddles. He loves his teachers and they seem to be very taken with him as well. His language has EXPLODED. He is asking what things mean, singing nursery rhymes and remember things. It really is like waking up each morning and finding out a new part of his personality has developed overnight.

Speaking of nights – someone is sleeping in a bed now! That transition has been pretty seamless except for naptime. But bed time might take a little longer, but he has stayed in bed all night and actually slept. I see that as a big win.

mike

{Muddling Momma} This Muddling Momma is just trying to keep up these days. A week after S. came home from surgery I was relieved of my duties at work which means spending my days at home job hunting. While I won’t ever lie, it stings and was a surprise, I firmly believe it was probably for the best though the timing could not have been worse. However, the silver lining is I can spend time with S. and help with his recovery (which usually means telling him to go take a nap).

On the positive side, I was FINALLY approved to be on the Chick Fil A Mom Panel this year so that was a bit of good news! I am still learning about my ‘duties’, but I am excited to eat some chicken and share some feedback.

There you have it! Like I said, life is a little sideways but I think we are going to come out on the other side and wonder how we survived. But we did and that’s the important part.

jackie