Establishing a Cardiologist In Atlanta

We had an appointment this past Thursday with Sibley's Cardiology in Atlanta.  The appointment was only two hours long which was not bad for an establishing appointment.  The doctor asked us to bring him back in three months to be seen by the doctors who specialize specifically in Hypertrophic Cardiomyopathy.  First impressions of the doctor and the clinic is that we liked them.  Kody was included in conversation and treated with respect.  Of course he liked all the pretty nurse techs.  The doctor came into the room where he had the echo done and explained everything he was seeing on the screen and asked if we had any questions.  At this point his heart has not gotten better but not gotten worse in comparison with the notes from the last appointment in April.  They have not yet reviewed his full chart because it had not been received by the clinic.  It had to be sent via snail mail because of the amount of information.  

Summary of report:

*Mitral valve regurgitation is present and is mild. This means the valve between the upper and lower chamber of the heart on the left side does not close properly so the blood being pumped out trickles back into the bottom chamber.  

*The right portion of the mitral valve when opening has a tendency to suck up to the right side of the wall.

* Thickness of the heart muscle is such that though it is pumping efficiently the walls touch when the chambers fully contract.

I made mention of the aorta narrowing but did not ask about it when he had the sonogram screen in front of me.  

I will call on Tuesday to make the appointment for three months from now.  Because of the HCM he has to be seen on a Monday and at the clinic in Atlanta verses their location in Marietta which is closer to us.

Dr McKenna Called About Holter Monitor Results

First off, I have learned when the doctor himself is calling you that the news is not what you want to hear.  Secondly, I was right in the first sentence.  His 24-hr monitor showed more atrial fibrillation and tachycardia.  McKenna suggested we start him on a small dose of Atenenol (beta blocker) that he said may or may not work.  This is something we tried before and the medication made him sick, vomit, faint, and blood pressure drop.  So, we will not be putting him back on that medication.  I could hear the concern in his voice as he was talking to me.  It is an unmistakable sound in voices when they are concerned.  I had figured there was not much change because I hadn't heard from him about the monitor and it has been a little while.   

Seems when we think things have leveled out with Kody .... things change for the worst.  At the moment I am still working to process this new information .... not sure how to feel about it all.  We just came back from an amazing vacation and then I get a call from his doctor that is just like wow.  

((HUGS))

Cardiology Appointment Updates

Kody has an appointment with Dr. McKenna this morning at 11am.  It has been six months since the last time he was seen and his heart condition has progressed.  The doctor said he noticed the heart isn't contracting like it should be as it had been doing before.  He said he would like us to take him to see the Pulmonary doctor and have his lung status evaluated.  There is come concern about aspiration that is not immediate but something to be addressed to see if there has been any change.  Also he made mention of how thin Kody is.  Anyone who knows Kody knows he eats like a horse.  He is thin because his heart is always on overdrive so it requires more of him.

I asked him a few tough question which he answered the best he could.  One of them being ... at the rate of progression of his heart, how much longer is it going to be able to function under the current stress it has on it.  He simply said it could be a little while but that he does not like to time stamp things.  

I was a bit anxious as we entered the hospital.  His doctor said he would like to see Kody back in three months instead of six.  

When Kody was asked if he had any questions for the doctor he smiled and said no.  Earlier in the day he told me he didn't have any questions but that he knew his heart was getting worse.  He then smirks and is like "That stuff just keeps sneaking up on me."  Then he face palmed.  

If you have any questions feel free to comment or email.  ((HUGS))

Cardiology Vist @ St Joseph's

At 9am today we were arriving at the hospital for his cardiology visit.  We didn't leave until nearly 12:30pm.  Will thought because when we got there no one else was there that it wouldn't take so long.  Guess they had took everyone else back before we got there.  They did the EKG (electrocardiogram) and the ECHO (sonogram of the hearts anatomy) which didn't take all that long once we got back into a room.  Blood pressure was fine but oxygen saturation levels were at 96% during a relaxing state.  Once the doctor took a look over the echo and ekg he came to talk to us.  He wants us to make an appointment with the Orthopedic doctor to get an update on the status of his scoliosis which won't be an issue.  Though I did ask him to recommend a good one within the hospital because the one we seen last was an ass.  Now I didn't put it that way but Dr. M knew what I meant.  Chances are once he sees the Ortho they will want him to see Pulmonary.  So we shall see how that goes.  His heart has gone from HCM (Hypertrophic Cardiomyopathy) to HOCM (Hypertrophic Obstructive Cardiomyopathy).  The pressures in his upper chambers of his heart are registering higher than they were at the last visit 6 months ago.  This of course meant the doctor asked if I would be alright with him having a halter monitor.  It's only for a 24 hour span and so he did indeed come home with it. 


Over all this visit wasn't too bad.  Yes his heart is progressing but no medications were suggested.  This in part because Dr M know's how I feel about putting him on medications that will make him feel like crap. 

Right now we are shopping around for a new manual wheelchair until we can obtain a vehicle that can handle his electric chair.  Any suggestions on companies? 

((HUGS)) to the readers who keep up with our lil man

Upcoming Appointment

08/05/2011 is the next Cardiology appointment for Kody.  This will give us an update with his heart status.  As it grows closer to these particular appointments I am the one who gets a knot in the pit of her stomach.  He seems to have stabilized and it should be reassuring for me but it just isn't realistic to just sit back and think things are as they seem.  School starts back soon for him which he of course probably has mixed feelings about.  This means stricter bedtimes and homework but he does like the weekly visit from his home bound teacher.  Gives him some outside connection and I am pleased with how his teacher interacts with him.  We have gotten lucky thus far and only had one of the home bound teachers that we had to have reassigned in all the time he has been on home bound.

He had a blast at camp this year.  Made some friends and seen some familiar faces from last year.  I'm happy he has the opportunity to have that week away where he can be without us and doing his own thing.  After all he is 15 years old and should in all rights be able to do that in everyday life but that's not the case.   

MDA Clinic Appointment

Today was a clinic appointment and a wheelchair appointment @ St. Joseph's Hospital in Tampa.  It's been about 8 months since the last clinic appointment and we seen a different doctor this time which was alright.  He seems to be on the same wave length as us on how things go.  Initially I thought we would be able to get a new set of wheelchairs because that's what we got in NC but that wasn't the case.  So given the option we opted to get a new electric chair and he chose to get a blue one which was cool.  There will be a couple trips back to the hospital to get fitted for a silhouette made for his chair which will provide more stability and give Kody the ability to not have to worry so much about holding his trunk up.  Also got the note from the physician about his schooling situation.  Now I just have to get a hold of someone to make an appointment for the registration.  Okay so I left a message and they are suppose to contact me back.  

Kody is now 5ft tall and 71 pounds.  That's a 4 pound gain since May 28th.  That's not too bad of a change.  The clinic weighed his wheelchair while he was out of it and then subtracted the weight of the chair from the weight with him sitting in it.  

We will see the clinic again next January for a visit.  His next appointment isn't until November for the cardiologist.