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))

Kody Champagne: Cardiology Visit

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. 

Kody Update 1/2013

Kody updates

Kody had a spill earlier in the week and has some marks on his face.  He is doing good except for some minor edema today. He is anxiously waiting for Christmas so he can get into his gifts.   He wants the movie Ted and is excited at the prospects of new games.  He is doing well in school and spends most of the time getting along with Rikki.  Notice I said most of the time.  

At the end of January he has an appointment with the Pulmonologist and then I have to make the appointment for the Cardiologist.  The first appointment is to look into lung function and his ability to swallow without him aspirating.  

It amazes me how he handles his life ... and it is awe inspiring.  We are so proud of how he handles himself.  

Later on today I have to call and make two appointments for our teenager.  Yes I was tempted to put little man but he is not so little anymore.  The first appointment is for the Pulmonary Doctor which I am hoping can be at the main hospital we go to for everything for him.  It has been a little bit so calling will give me a better idea.  The second appointment is to see the Cardiologist.  Dr. McKenna said he would like to have him evaluated by the Pulmonary Doctor ... Dr Schnaef (?sp).  Oh I guess I should put that McKenna is his cardiologist and not just assume everyone knows who he is, right?  Sorry, had a mom moment.  It is becoming more noticeable the change in his muscle control in the neck region.  Yesterday my DH asked me why KC was bobbing his head while he was eating which is simply because he does not have the same head control he had a year ago.  I have to say I did notice the difference a few weeks ago but thought I was the only one who had noticed.  It is hard to see more of the progression and not really be able to fix things.  He is such a trooper though because he does not complain much about anything.  It may be too late by the time I get home to make the appointments so instead I may call in the morning.  Besides I have to look at the calendar to see when they have off school so the appointments do not impede on his classes.  He is doing so well in them.