Thursday, October 8, 2015

Invisible Threads



This is a quote that is sandblasted in glass as you walk into the University Hospital at University of Utah.  It struck me...in many ways.

My actions in life have always been for the good of my kids.  Even before I had kids, the things I did, the people I met, the experiences I had, prepared me for this cause...taking care of my kids. Maybe all mothers feel this way, I don't know.  But, without a doubt...I have been led to this point.

As I read this, I also had the overwhelming feeling that all I really want in life is results.  Good results.  Long lasting, happy results. I want results that will fix my kids, though, I know, that that has become water under the bridge.  There is no fixing anymore.  There is sustaining and supporting but that isn't the same as fixing. It's not giving up or giving in, it's just a shift in thinking.

We met with our new Cardiologist this week.  We all really like him.  He grew up in Canada, in the same place where I was born.  He knows all of my relatives and I know some of his.  I especially know two of his uncles who were twins.  My grandma always talked about the Whitehead twins and what beautiful voices they had.  I remember like it was yesterday, hearing them sing, "In the Hollow of Thy Hand" when I was much younger.  I don't know where I was or what the occasion was but I can't believe I remember them.  Their faces, their voices...and here we are so many, many years later their nephew is our new doctor!

He specializes in congenital heart defects but specifically, arteriorvenous malformations of the heart, lungs and liver.  He is also a Bench Scientist so when he isn't seeing patients, he is doing ultrasound on fetal mice.  He examines and studies their hearts and venous systems...on fetal mice...still in the womb!!  It's an amazing thought!.

He was very patient and didn't appear to be overwhelmed with the complexity of our issues.  We ended up having to stay an extra night because of further testing he wanted.  Of course, there are no answers yet, it will take some time to gather all the information together, assess the results and then make a plan.

Something I really appreciated in him is seeing the need for a complete medical team, under one roof!  I didn't realize how our scattered doctors left us at a huge disadvantage. He will be working on gathering those people.

The biggest concern at this point is definitely with Spencer and his continued weight loss, another pound off this week and his deteriorating lung capacity.  In addition, Shelbie's heart and lung issues that continue to get worse.  Sam is holding steady and that is awesome news.  A relief really.

This morning, they all had to do a test called a 6 minute walk.  Now, this doesn't sound very hard does it?  No incline, no mph to gauge, just walk at your best pace for 6 minutes while wearing a heart and respiration monitor on your wrist.

It cut me to the core when my kids, my active, busy kids, could barely make it through 6 minutes.  Sam did the best but his resting heart rate is 41, even lower than Lance Armstrong's resting heart rate.  Within seconds, his heart rate shot up over 100.  That is completely abnormal.  It means his heart is stressed.  Shelbie started at 75 for a resting heart rate and the same thing happened to her.  They literally had a guy with an oxygen tank ready to revive Shelbie during the 6 minute test.  After 90 seconds, she looked like she was going down!  Spencer's resting heart rate is 105!  Resting.  Add a walk to that and he did just what Shelbie and Sam did.

This is what is puzzling the doctor.  Structurally, the problems they have don't show these kinds of issues so what is it...what is making their hearts work so hard?  Too hard.

So...we wait.  We just keep waiting.
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