Broken Hearts

I did not see this day coming!

I had made an appointment last week for Sam to see a new doctor here in town.  His dizziness has been getting worse.  He is going on a month or more of this.   He has been at the Chiropractor for 3 weeks in hopes of helping his neck pain which I attributed to the cause of his dizziness.  It has not been helpful and the Chiropractor was a little perplexed and sent Sam for an x-ray two days ago to determine why he isn't getting better.

 The past three days, he has done nothing but sleep all day long or lay around on the couch.  Sometimes, it's hard to tell the difference between bored Sam and sick Sam.  When Sam is bored, if I ask him to do something, he grumbles and complains.  When Sam is sick, if I ask him to do something, he quietly gets up and does whatever I asked of him.  He hasn't been grumbling and complaining this week so something is wrong.

This morning, we went to the appointment.  Right off the bat, things weren't progressing as they normally do at the family doctor.  The nurse calmly said, "Does your heart rate run low?"

"Really low?"
"Yes, like in the 40's"
"Okay, just a minute." the nurse leaves the room

She comes back in and starts running Sam through the orthostatic blood pressure checks.  I know this because it's the same thing Spencer had to do.  I can tell she is still not happy.  She leaves and comes back in with another nurse and they announce they are doing an EKG.

"I already know his heart has issues, do we need to do this?  It isn't going to tell us anything we don't already know.  I just don't want to pay for something that isn't necessary."

"This is necessary. His heart rate is only 33 -34 and we can't get his blood pressure up. It's pretty serious."

So, we go into funny mode because apparently that's how we handle situations like this; find something funny to laugh about.  That helps, at least until the wee hours of some night when I find myself doing the laugh cry routine because everything is so overwhelming.

Even when the doctor finally came in, I was so bugged that  we weren't addressing his neck pain and dizziness because I am worried he has a blockage of cerebral spinal fluid so I keep coming back around to Chiari's and all that.

He finally had to say, "Ok.  I understand you are worried about that but right now, his heart takes precedence.  He needs a pacemaker.  I'm not a cardiologist but I know when someone is in trouble and your son is in trouble."

Geez....Here we go!  The next crazy thing.  Seriously?  We can't just take a few months to adjust to our Epilepsy thing?

He asked if we could leave this morning for Utah.  He knows two Electrocardiologist at the University Hospital and his experience is they waste no time.  I said, "No.  Not today, but we will be there next week for testing so could we do it then?"

He was a little perplexed that I am willing to wait a week on Sam's heart.  I guess, the problem is, my fight and flight mechanism doesn't work anymore.  I am so use to living life on high alert, I don't even react appropriately to things now.  The doctor wasn't a big fan of me I don't think but I won back his love when he found out I feed my kids Mountain Dew Kickstart for Breakfast!  He actually advised that I increase his caffeine intake to 100 MG day and night.

Just to clarify, I'm not that much of a loser of a mom for giving my kids a caffeine laden breakfast.  Sam has processing issues similar to ADD but it isn't ADD.  The ADD meds had too many bad side effects so we self medicate with caffeinated drinks which helps him a ton.  Sam with the other two but not to the extent.  

Anyways, the doctor wants me to do anything I can to keep his heart stimulated.  Sam's liver enzymes are high again!!!  I just know we are headed into liver problems next.  He's been a year of yellow eyes off and on and bilirubin up and down.

As we were getting ready to leave, I asked, "Just out of curiosity, is he at risk of dropping dead?" Do you like how I mince words?

"Well, that sounds dramatic and I don't like to be dramatic but he needs to be careful.  He needs to rest more and watch his activity level and definitely don't stress his heart."

So, I'm a little blindsided and a lot nervous about him getting a pacemaker.  I'm just not sure how all of that is going to affect his venous malformations, the blood that is shunting outside of his heart...etc. Of course, the cardiologist gets the final word so maybe the plan will change.  But, here we go!  I'm so heartbroken that it has come to this for Sam.

Sadly, he is a little upset so guess where he is?  My kids don't take bad news sitting down!  He is at the park slacklining, then going bridge jumping, followed by work until after midnight!  I begged him to please not do all that today and I got the answer I always get..."No.  I don't care if my heart stops.  If I die, I want to die having fun."

Ugh...these kids!  They scare me to death.  I have no choice but to let him go and hope for the best!

Today, Shelbie has lymphatic fluid leaking profusely from her still swollen leg.  I don't get it.  I'm sick of trying to figure this out.



  1. Kathy, if I didn't know you, I would think you were making this up. You really should write a book! Prayers for you always.


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