Words

Heart disease
Severe
Hypertrophic cardiomyopathy
HCM
Beta blockers
Surgery
Surgical myectomy
Heart transplant
Cardiac arrest

These are words I never thought would be a part of our lives...of my son's life... my 6 MONTH OLD'S life!!  Unfortunately I have had to familiarize myself with these heartbreaking words.  While some of them are not what we are facing at this particular moment, they are possible and part of this disease.  Even as I typed some of them my hands were trembling, my heart was racing, and tears are welling up in my eyes.  I still can't even say them all without crying.  These words are now a part of our lives...and scary as they may be, they are our reality.  I am going to try and describe these words to you so that you may better understand our little man's condition.

Heart disease-  Cam's poor heart is not well.  We are so blessed that this disease has not stunted his growth or development.  The fact that his heart is so incredibly diseased and that it has had no adverse affect on him at all is amazing.  This helps me find comfort.

Severe-  His condition is bad...not the worst it could be, but it is bad.  This by no means is a death sentence, please understand that, it is just something that must be monitored closely.

Hypertrophic cardiomyopathy- This is the name of Camden's disease.  Basically his heart is too strong...

 

Above is a picture of two hearts, on the left is a "healthy" or "normal" heart and on the right is a hypertrophied heart.  As  you can see, the muscle on the right is much larger...aka too strong.  Because the muscle is too large, it does not allow for the lower left ventricle (the lower side of the heart on the right)  to fill completely up with blood and push it through the aorta to the rest of the body. 

 



• This is what amazes me about Camden:  According to his cardiologist, the thickness of the septum muscle (the muscle between the two ventricles) is "normally" 6 mm...when they did the echo, they found that the thickness of Cam's septum muscles is 17 mm!! Almost 3 times the size it should be!  Hearing that was originally very scary, but to think about how well he has developed, how much he has thrived, and his ability to constantly be on the go with his heart performing so shitty completely amazes me!

HCM- an abbreviation for Hyptertrophic cardiomyopathy.It is important to know that my little man's heart will never be "normal" the thickness of his septum wall will never decrease and there is nothing they can give him to prevent it from increasing, all we can do is hope and pray. 

Beta Blockers-  These are used to slow the heart rate down to allow for the left ventricle to fill up with as much blood as possible and then forcefully shoot that blood into the aorta...just as taking slow, deep breaths allows for oxygen to get to the rest of the body.  Camden is currently on 5.5mg of propranolol and is doing great!!  The cardiologist eventually hopes to up his dosage to 8 mg.

Surgery- the possibility of surgery is there, but it is not something we are to focus on.  It is just something  I have to mentally prepare for in case we do get to that point.

Surgical myectomy-  This is a procedure where they go in and scrape off some of the muscle.  The cardiologist assured me that we are not going in that direction right now, but should his muscle thicken, it is something we will have to consider.  Part of me wants to have this procedure done for my piece of mind...it allows the left ventricle to fill up with more blood, and doesn't make the heart work so hard.

Heart transplant-  WE ARE NOT HERE!!  But, many people with HCM do get heart transplants.  I have a hard time with this because if my baby does need a heart transplant then that means I have to pray for someone else to lose their baby and as a mother, I would never wish that on anyone.

Cardiac arrest-  This is the scariest of all these words to me...the possibility that my baby could go into cardiac arrest.  The good thing is that the beta blockers will not allow his heart to reach a dangerous point...but the thought of "what if" is in the back of my mind every single day

•  Because this is a possibility we all asked to be trained in infant CPR.  Now, I have had CPR training before as I have worked with kids for quite a few years, however when it came time to demonstrate that we knew how to perform CPR on the infant  doll, I lost it.  I had never imagined I would have to think about doing this on my baby boy.  This was a very hard experience for me to get through in the hospital...thank goodness for the support of my family!

Words. Scary words.  New words.  All of these words are now a part of my life, Sean's life, Camden's life, our families lives and while they are very scary, it is important to be educated and prepared for all of them.

Camden has shown us how strong he is from day 1, basically holding his head up from the day he was born and now his strength is more important than ever.  They call kids with this disease "Heart Warriors" and I think that is perfectly fitting for my little fighter

--Heart Warrior Momma