Doctors Visits Tend To Make Me Nervous

Yes, I admit it that they make me completely nervous.  I think more so because this is a CARDIOLOGY visit so it will give us a look at how the Hypertrophic Cardiomyopathy is doing.  It has been about six months since he seen doctor McKenna.  The one thing that I do know is with every appointment there has been progression, even if it only a little bit.  I will post a video blog tomorrow on everything since today is going to be crazy busy. 

All About The Heart

Tomorrow at 11am we are going to be at the hospital with Kody for a Cardiology visit with Doc McKenna.  It has been six months since his last visit and so we are going for an EKG and a echocardiogram to find out how his heart is weathering the Friedreich's Ataxia wrath.  This particular appointment is what usually has me on edge.  Your heart is your heart and it is required to function properly.  I have noticed his breathing when he is talking has changed.  He is not able to say quite as much before having to recharge his breath.  

Kody started school this week.  How does he feel about it?  I think he has mixed feelings on it because though he does not mind his reading, he is not very big on science classes.  I wish he was well enough to be back in school.  He has such a bright and cheery demeanor that would do so well in a social environment, like school.  

He does well in the home setting though.  He has a family who loves and supports him.  ((HUGS))

02/24/2012 Cardiology Appointment Update

Yesterdays appointment went as well as to be expected.  He has had some change to his heart but nothing significantly different then from the appointment 6 months ago.  Dr. McKenna and I spoke about the orthopedic doctor's advice  to have the spinal fusion surgery.  The surgery would hold more risks and the mortality rate is higher he said the surgery is a possibility.  It would require the best of the best to handle every single detail.  I sat back and acknowledged I was listening to the information but politely declined the surgery.  The thought being that I not only want to respect Kody's opinion but also we, the doctor and I, understand it is quality over quantity. 

With that being said this appointment was not as I expected it and it was a good thing. 

((HUGS)) to our readers

Appointment Date

I called this afternoon to set up Kody's 6 month check up with his Cardiologist.  The appointment is set for 2/24 @ 9:30am with Dr McKenna @ SJCH.  I will update once that appointment has come. 

Orthopedic Surgeon Appointment Today

Doctor McKenna from SJCH recommended an Orthopedic Surgeon that resided next door to his practice for an evaluation.  Let me first say I did like the way this doctor was.  He had a great demeanor and was straight forward about things.  This picture is from that visit today.  As you can probably tell his heart is enlarged.  The spine is curved to the right (severe scoliosis) and crushing his right lung.  The only option is to do spinal surgery to straighten out the spine but from a cardiac (heart) standpoint that is not an option at this point.  In fact the mortality rate (death rate) is VERY high due to the cardiac status of Kody's heart.  This is now put him at high risk for cardiac and respiratory failure.  His curve has went from being 60 degrees to the right to being 115 degrees to the right.

Okay now that is all the technical information that we have gotten today.  This all puts a knot in the back of my throat that I cannot seem to clear.  Essentially this means with his lungs and heart already at risk for failure that something like pnemonia would be fatal.  I am going to set up the appointment due for the Cardiologist, this February, sometime this coming week.  My heart sunk at this appointment in a way that I cannot quite explain.  Here is this totally happy, bright, handsome young man and he is handed this load to bare.  He has made it very clear he does not want any surgery and we will respect his wishes.  Afterall, if he cannot control the disease process then at least he can control the medical interventions.