Friday, November 12, 2010

A New Normal

“Don’t forget to pack the red medicine bag!” I yell, mostly to myself. Did I already grab it? Did I remember the refills? Two puffs, twice a day, plus the back-up inhaler. Did we pack enough? Peak flow meter? Check. Nasal spray? Check. Just when I thought it was impossible, the must-pack list for family vacation just got longer. 

The day my son was diagnosed with asthma
Three months ago, my 7-year-old son was diagnosed with asthma. We were in his allergist’s office for a routine appointment, trying desperately to control his exploding seasonal allergies. Even in the face of multiple medications, his allergies would continue to flare up each spring. We’d tried at least four different medications but always ended up back in the doctor’s office after missing three or four days of school. His face and eyes would swell to the point that I would hardly recognize my own child, and he would spend his days open-mouthed (unable to breathe through his nose) and furiously scratching at his itching, burning eyes.

The day he was diagnosed was one of those days. He had mostly recovered from the swollen face, but his allergies were still clearly not under control. His tall and lanky doctor moved back and forth across the room. Not in the slow, methodical way you expect doctors to move, but more erratically – like he kept remembering what he was doing and changing his mind and trying something different. Asking William to move here, go there, blow on this. Try again. Harder this time. 

The doctor looked at the gauge on the side of the hollow tube.
“50,” he says. 
“What does that mean?”  Is this good? Bad? Indifferent? What is it he’s looking for?  “Well.  The target is to blow over 200,” he said matter-of-factly and continued his exam, not sharing anything he was thinking even though he was clearly thinking a lot, judging from the furrowed brow now permanently affixed to his face. 
“What does that mean?” 
No answer. 
“Here. I want you to blow in this tube.” William blew into the tube and the doctor studied the computer screen attached to the tube. “Try again.  This time blow out harder.” William blew out again. “Hmm.” He wrinkled his brow further and looked at the screen a moment longer. Then he walked over to his desk against the wall and began to write. 
A couple of minutes passed. I thought to myself, “Is he going to say something?”   Information. Please. Would be nice. 

“Has he ever been diagnosed with asthma?” 
Asthma!?  Where is this coming from?!
“No,” I said. 
“Well, looking at these numbers and knowing his history with allergies, I think he most likely has asthma. I’d like to get a chest X-ray to confirm.” 
And then he stopped talking again. I mean truly and completely stopped talking. The words “Your child has asthma” were just left hanging in the air. All alone without any explanation or further information. Nothing. Just left hanging there to fend for themselves. 

“What does that mean?” I asked. He continued to write in the chart, back turned. 
“Mom, is it time to go yet?” William asked. Eventually the doctor turned, handed me a giant stack of prescriptions and left me with the direction to “Go to this website and look for information.”
And that was it. A stack of prescriptions for things I had never heard of, couldn’t pronounce and couldn’t understand – including an EpiPen. An EpiPen! What was I supposed to do with an EpiPen? And more importantly, why did he need one? 

This began our journey. Countless hours of research online and books checked out from the library later, we are getting a handle on this new normal.  

We’re on a journey
This began our journey. Countless hours of research online and books checked out from the library later, we are getting a handle on this new normal.  

No one in my very large family had asthma when we were growing up. No friends or relatives. No one. 

Asthma was the description you used to help describe someone who was a nerd, or couldn’t participate in sports, and that was all I thought of when I heard the word “asthma.” Now I was hearing the word used about my son, and panic began to strike. 

I am the mom to three boys. I’m used to bumps and bruises, sprains, cuts, trips to the emergency room -- and even firemen trekking up the stairs to our living room once to check William out after a sledding accident left him bleeding from his ear. I can handle most things. 

But breathing problems are something else. What am I supposed to do about my son’s breathing problem? If he can’t catch his breath, a special cream is not going to help. Rescue heroes aren’t going to help either if it takes them 10 minutes to get to my door.  What am I going to do? 

I’m going to do what anyone else would do. I’m going to learn everything I can about asthma, and we’re going to do everything we can to keep it in check.

Since his diagnosis, I have learned volumes about treating asthma, preventing episodes, watching for signs of an episode, monitoring and controlling what causes his symptoms. I’m becoming very close to our new doctor. I know we’ll have stumbles down the road – that’s life. 

But right now I have a child who is so much healthier than he was three months ago.  Symptoms he once exhibited that I didn’t even identify as symptoms – I’d thought they were just part of him – have gone away. He’s had his best summer yet. He finally learned to ride a bike – and competed in a kids’ triathlon a week later. Asthma hasn’t slowed him down at all.

I did wonder, after the triathlon ended, what would have happened if he’d had some kind of episode during the race and they couldn’t find me and didn’t know he had asthma. Next time, I think I need to look into getting him one of those medical bracelets or something. Until then, I continue to take along my new constant companion everywhere I go – his little red medicine bag.

Share your asthma and allergy journey -- e-mail your stories, tips and comments to editor@aanma.org, and I'll share them on this blog!

3 comments:

  1. I am looking forward to following your blog! My 5 year old was diagnosed with asthma 3 years ago and I am still learning new things about it.

    It sounds like you might want to look for a new doctor who will communicate with you. I can't imagine how hard that appointment must have been.

    Congrats on your new blog!

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  2. What a wonderful blog! Kathleen you are an amazing mother who will do anything for your children. They are blessed to have you. You have put in countless hours learning about Will's asthma and you can teach us a lot! How encouraging for other parents to read your story and see that their children don't have to be slowed down by asthma either! Congratulations on your new blog!

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  3. My son, who is now 6, was diagnosed in the ER with asthma in November, 2006. He was having problems with coughing since Sept. He was put on the nebulizer than, but things got worse. We had no choice, but to go to the ER. That winter we were in the ER 3 times. When he was 10 months old, he turned blue & was taken by ambulance to the ER. We were told asthma, but he was too young to diagnose with. So at the age of 6, we weren't surprise to get the diagnose of asthma. I have an asthma journal that I write down everything down in. I am always working on a website for Noah, too. I think it would be wonderful for Noah to meet other kids just like him in our area. I plan to talk with our pediatrician in the spring to see if we can do that. I love your blog!!

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