Heading home from yet another trip to Dallas…our 15th year of appointments at Children’s Dallas.

This time we moved with Dr. Zellers over to the Plano hospital, and I am quite impressed!  Was just really wierd not going to the main hospital after doing this for so long. However, we got to spend alot more personal time with Dr. Z and had virtually no wait time.

So where are we with Kaston’s cardiac status?

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He had a 24 hour Holter monitor done Monday/Tuesday but Dr. Z didn’t have time to get the reading done on it. He wants to compare it to his last one and see if he sees anything different. His EKG and Echo looked good and he is in normal sinus rhythm.

He said he may want him to come back and do an exercise, or stress test, to rule anything out.  Basically, we are trying to get to the root of his extreme fatigue.  He sleeps all the time and it’s only getting worse.  (He’s asleep right now and slept 12 hours last night) When he is active, his recovery time is twice as long as it used to be.

We feel it is likely a combination of things.  His heart rate really doesn’t get above 115 or so and his average heart rate is in the 40s.  This in itself will cause anyone to slow down.  Top that with his 60% cardiac output from his Fontan anatomy.  And add the demands of puberty into the mix.

This may be just how his life will be. Could a pacemaker help?  Maybe.  But could that harm him too because of his anotomical design? Maybe.

Is there an underlying cause we’re missing? Maybe.

So we will wait to hear back from him next week and see where we go from here.  We may need to go back and do the stress test.  We may just let him push through it and see if he improves.  We might have to just say, it is what it is.  And let the boy sleep.

I am not sure how I feel about it all. Part of me says if, it is what it is and this is what his life will be like from now on, I knew this day would come, just not quite so early.  We knew he would start slowing down and his heart would not be able to  manage the demands he puts on it. So that’s a little disheartening if that’s what it is.

If he needs a pacemaker, that’s a whole new set of responsibilities and limitations for him to worry about. But if it improves his quality of life, then that’s what we need fo do.

I just have to remind myself it could be worse.  He is in relatively good health, his liver seems to be doing ok, his heart function looks decent, his lungs are junk but nothing we can’t deal with, and he gets to lead an easy and adventurous life. Because we designed it that way for him. Let’s get as many as those peak life experiences in as long as we can, because that opportunity will not always be around for him.

Dr. Z seemed pretty excited for him to have gone scuba diving and was glad to hear he did so well.  He said he only had a couple of Fontan patients that had attempted it.  And he asked what his next adventure was going to be…skydiving?  Of course Kaston said yes, one of these days!

So, we’ll just keep on keepin on until we hear differently!

 

 

 

 

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