The Stopwatch is beeping – and stopping my heart

by Sarah | Mar 31, 2011 | All About Denver, All About Kennedy, Cystic Fibrosis

The stopwatch was never ending.

Just a few weeks ago I lamented the never ending ticking of time.

Over four years of non-answers for two children, going on months for the latest.

I just wanted answers. One answer.

Today the stopwatch started beeping, signalling time up.

It sounded strangely like a ringing phone.

**

Yesterday we took Brandon for his “repeat sweat” test.  It was to rule out error in the initial (low) abnormal score.  Accounting for the test having an error and his numbers actually being in the normal range.

It was a formality.

Except, it stopped being a formality when the doctor’s office called us to give the results…instead of waiting for our call.

This time the numbers were different – but they were in the positive range.

Add in the ugly appearance of his lungs on the x-ray for December.

And the appearance of staph on his sputum culture.

And the odd result of his genetic test.

They’re calling it.

Brandon…

He has Cystic Fibrosis.

Which gives Angel’s odd course to diagnosis even more credence.

I asked for answers.

Now we have to figure out how to give answers to my 13 year old son.

Angel is growing up with it from the age of 1…to her it will be ‘normal’.

Brandon is a fully functioning, exceptionally brilliant young man…with a bad case of the worries.

His life today will not change…he’ll have more meds, and will get a chest compression vest/machine of his own.

But getting him to understand that.

To understand its not a death sentence.

That his life will be full…and probably very long.

Somehow we’ll make him understand.

Once we get our heads around it.

Then what the HELL is it?

by Sarah | Mar 17, 2011 | All About Denver, All About Kennedy, Cystic Fibrosis

The seconds tick by.

Second by second.

Into minute by minute.

Into hour by hour.

Into days.

Into years.

4 years ago we were in the midst of a struggle for a diagnosis. The years of questions evolving from one stubborn cough. Four months later it came down to an unsure “most likely is” but “might not be” diagnosis of Cystic Fibrosis.  (read the full story in parts: 1, 2, 3) 

Last year in May we got the words from the pulmonologist that made Angel’s diagnosis “Absolute“. Because unless you have Cystic Fibrosis…you don’t get psuedomonas.

Then I got the brilliant idea to have Brandon tested.  This spiraled into genetic testing for both Angel and Brandon.

The test results are in.

And still we have no answers.

They both have a defect on the CF gene.

Angel’s is more ‘severe’ than Brandon’s.

In either case the defect found is not a KNOWN strain of CF.  It’s not a known defect…it’s on the gene…but it’s never been seen before.

The official word of the pulmonologist…the one we have trusted for 4 years…the words she’s calling it…the words she’s using…I want to have faith in them.

She says that how she reads it is this:

1. Angel has Cystic Fibrosis. As we have said for 4 years. The defect on her gene is not a recognized defect…but it is CF. It’s quite possible that this unusual defect will mean her CF will continue to be a milder version, we just don’t know.

2. Brandon has asthma.  While he has a defect on the CF gene, also unrecognized, it seems more like he’s a carrier than an actual CF patient. He is to continue to see the pulm for asthma every six months and that is how we will continue.

3. Both of them need to go to a genetic counselor for a more in-depth appraisal of the results. So we can learn more about what it means for Brandon’s future & having children…so we can look more into the oddity of Angel’s defect.

I want to have faith in these words.

I want to have faith in the pulmonologist that has been with us on this whole confusing journey. That is the top in her field. That has guided us this far with an unwavering conviction in everything she says and does. 

My faith is shaken.

Once again I find myself floundering in the unknown.

On a journey that I thought was decided. The path clear.  The stopwatch clicked off.

Someone restarted that stopwatch.

The time is ticking away again.

The uncertainty dragging each second out until it feels like a day.

My faith in the doctors faltering. 

My faith in the tests fading away.

Back into the murky waters of unsurity.

Is it CF? Or isn’t it? 

All I have ever wanted for my children is answers.

One thing I have never received…

Is one 100% without a doubt pure, positive answer.

Not for Riley (we still don’t have a 100% on her, just a ‘likely’). Not for Angel (we thought we had it, but it was ripped away). Not for Brandon (not when he was little & not now).

Why is that so much to ask?

One answer.

I’ve lost faith that I will ever get that.

Just one answer.

Just one.