Sunday, February 12, 2012

A Rough Time...

This weekend, the determined me went looking through our medical records and replaying every conversation in my head with the various medical professionals we came in contact with.

I remembered several doctors asking us if Xander had ever been tested for cystic fibrosis.

I remembered trying to complete the sweat chloride test for Xander and twice him not sweating enough.

I remembered the ER doc at DuPont asking us about cystic fibrosis testing.

I remembered two residents asking us about cystic fibrosis testing.

And our family doctor perking up when we mentioned we did cystic fibrosis testing and the letdown on his face when we told him he didn't sweat enough.

And then I went through the screening questions from the gastroenterologist at DuPont and realized a lot of those were searching for... cystic fibrosis symptoms.

So.. I did it. I looked up cystic fibrosis.

And then I broke down into uncontrollable tears and shut myself in our bedroom and cried facedown into a pillow.

I looked up the odds of a biracial child having cystic fibrosis and didn't find much encouragement. I looked up if the fact that he didn't sweat enough would rule it out for us, and unfortunately it does not. I tried to comfort myself with the fact that he doesn't have frequent bronchitis and pneumonia, but then he does frequently have colds. Then I read that respiratory illnesses and/or gastro symptoms are usually common.

Other symptoms that Xander has that are also found in cystic fibrosis patients include:

Vitamin deficiency- Xander is low in Vitamin D.

GI symptoms- Diarrhea, large/frequent stools, mucus in stools, constipation, bloating

Slow/No growth- usually despite eating large amounts... which he was before we put Xander on elemental formula per the allergist.

I also found that while the sweat chloride test is considered the "gold standard" in diagnosis, some doctors will do genetic tests if there are issues with the sweat chloride results (like not sweating enough.)

And then panic set in. I know it was premature, but this is my blog, where I share my innermost thoughts. The day I can't be real on my blog, is the day I shut it down.

I tried to act like I had it altogether when Brandon called home from work. But he knew something was up within seconds of me answering the call. So I spilled the beans.

No mother HOPES for cystic fibrosis. I certainly am not. I *DO* want to know how to best help Xander, but I do not want it to be cystic fibrosis.

Tomorrow, I will contact the geneticist at DuPont to see if Xander is already being tested for cystic fibrosis. She only seemed interested in Xander's "atypical birthmarks" and admitted she may not ever find us an answer for that. In fact, she told us that she wasn't even going to touch his gastro issues.

If she isn't running it, I will phone our family doc and see what he thinks.

At least if he tests negative, we can officially rule it out. Right now we have two tests that were run that have no results! Two question marks.

I've been reminded by a sweet friend, that *we* are Xander's best advocate. Sometimes that seems overwhelming. It is an awesome amount of responsibility. But if we won't do it who will?

Today, I felt overwhelmed. I wanted to pull the covers over my head. This evening, I had the opportunity to chat with a friend. She reminded me that God already knows what Xander has or doesn't have. NOTHING changed with God when I read the information about cystic fibrosis last night. He is still my rock. When a day at a time seems to be too much, I'll break it into hours, minutes, seconds and that God will help me. He hasn't left me! He loves me and Xander.

And another day comes to a close. Tonight I'll lie in bed and count my blessings, taking slow, deep breaths hoping for the best. But no matter what, we ARE going to make it through all of this...with God's help!


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