Two Weeks Until Kody Turns 16!!

There was a time when I thought our son would not live to see his 16th birthday .... well here we are two weeks shy of it and he is seemingly stablized.  He is looking forward to camp in June which gives him time away from the securities of home and time with his peers.  His halter monitor showed what they expected .. it was not normal but it was not critically abnormal.  We are not doing the spinal fusion surgery but will be making an appointment with the Pulmonologist for this summer to get an evaluation of his lung capacity. 

He is doing great in school and his homebound teachers love him.  He has asked about going to an online academy which I will look into over the summer.  This would have him doing school completely online and he could turn in all work online as well.  He has talked about maybe taking online classes when he is done to be an online reading/english teacher when he is done with high school.  This was after he said his disability wouldn't make him able to be able to do classroom teaching or teleclass because his speech is so affected.  Time will tell though how things go and if he changes his mind.  We all know how teenagers are ...

((HUGS)) to our readers

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

Another Appointment @ SJH

In a little while we are headed off to St Joseph's in Tampa for a visit with the cardiologist, Dr. McKenna.  This is his six month check up which means he is getting an echocardiogram as well as an EKG.  I will be bringing along the xrays from the orthopedic appointment because McKenna is who wanted him seen by the doctor.  Also, I am going to mention the episodes to him just to get his input about things.  The xray will give him a outter visual though his interal visual will be more telling of the condition of his heart at this point.  Usually I am nervous and stressed about this particular appointment but I am taking a new appraoch and just handling things as they come.

I will update later on about how things went.

((HUGS)) to my readers.

Cardiology in The AM

Tomorrow morning is Kody's appointment with Dr.  McKenna .  It has been 6 months since visit so he will get an echocardiogram and EKG done.  This will give us all a better understanding of Kody's heart status.  I will bring up the couple of 'episodes' that he has had as well as bring along the xray he had done.  Updates will follow the appointment. 
((HUGS)) to our readers

This Morning ... Whew Thanks Kody

This morning was a bit of a hold your breath moment.  Kody got up for class and was fine.  He excused himself from class to go use the restroom and he seemed to be taking a little longer than normal to finish his business.  I, being the mom I am, walked into the bathroom with the "What are you doing?  Planning to skip class in the bathroom?" ... well he was crying.  It seems he started feeling ill.  He was breathing heavily and said his chest felt heavy and that he did not know why.  I grabbed the blood pressure machine to check that and it was 175/90 and his pulse rate was 145bpm.  This was clearly another episode like he has had in the past.

Thankfully it passed after about 20 minutes and he laid down watching netflicks for a while.  There goes another 10 years off my lifeline.

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.