3.08.2013

Something's Not Right

"He'll grow out of it.  My son did."



I've heard these words countless times.  From doctors.  From coworkers.  From relatives.  From strangers in waiting rooms.  "He'll grow out of it."

Every time Isaac's nose starts to run (whether it be from a virus, bacterial infection, hay fever, you name it), he has approximately 12 hours until he wakes up, gagging on and then throwing up ropes of thick, air-blocking mucous.  He'll wake up 3-4 times throughout the night, emptying the remaining contents of his stomach (mixed with more mucous) until he is finally too exhausted to throw up anymore.  That's when the mucous stays in his airway, limiting space for air to enter and exit his lungs.  I've been told that the mucous gets so thick that it can even block entire sections of the airway.  Instead of being swallowed or thrown up, the mucous hangs out in there, making it very hard to breathe.

That's not the end of it. The muscles in his tiny airway are also in spasm, restricting airway even more.  I read in a book that to the person experiencing this it feels like trying to breathe through a straw, and also like being slowly suffocated.

When Isaac wakes up after having this miserable night, his breathing is rapid, about twice as fast as usual.  This happens because his little body is working hard to get the same amount of oxygen in, even though the airway is so restricted.  Can you imagine how tired he must be, working this hard?  One doctor told me that it's the equivalent of running a marathon.

When I put my head up to his chest, I can hear a wheeze that sounds like a bed spring squeaking. There is barely any room for the air to get in or out.

This wheeze and rapid breathing is our signal to start oral steroids.  At this point we would have already been using his rescue inhaler at the rate of 2 puffs every 2-4 hours.  Sometimes, when it's exceptionally bad, we have to use the rescue inhaler 4 puffs every 15 minutes for up to an hour.  Add the oral steroids to the other medicine that is already in his little body, and he becomes the human equivalent of a tornado.  It's miserable to watch.  I know that he is tired and sick and struggling to breathe, but all he wants to do is run and sing and play, which would only make his situation worse.

When it gets this bad, we would have already spoken to a doctor or advice nurse to let them know what's going on.  We usually have instructions to keep up with the steroids for 5 days, up his daily inhaler (which is called a controller, different from the emergency inhaler) to 2 puffs twice a day (instead of 1), use the emergency inhaler to keep his airways as open as possible, and bring him in if we have any question about his safety or if things are getting worse instead of better. There have been 2 incidences that we've had to take him to the hospital.  The scariest moment was when he had to be transported by ambulance to a children's hospital and then admitted into the PICU after being diagnosed with acute respiratory failure.  You can read about these hospital visits in past blog posts of mine.

I have all the medication we could ever need to keep him stable in the event of an asthma attack.  I know the quickest way to the closest hospital.

But that's not enough.  Something's not right.  I'm living my life on the edge, just waiting for him to get sick again.  When he goes to church, or a friend's house, or the store...I'm nervous.  What if he catches something?  Will this be the time we have to go to the hospital again?  Will this be the time I have to watch him endure breathing treatment after breathing treatment, be pumped full of steroids and antibiotics, and cough and throw up and, and, and....

I feel very blessed to know some wonderful people.  One in particular is a close friend of mine who is a Naturopathic Doctor.  With her help, we've been able to identify things that can possible help Isaac to heal and stay well, instead of only treating his asthma when he is having an attack.  After some allergy testing, he has been put on a diet free of corn, eggs, soy, gluten, and dairy.  It's been a struggle, but even after just 2 days I can see tiny improvements. 

This blog is dedicated to documenting our day to day life.  What is it like to have a son with asthma, who is also a picky eater, a little bit hyper, extra sensitive, and a bundle of smarts and sweetness?  What kind of food does this child eat?  What failures do we experience?  What triumphs?  What do we do to try and heal, instead of just waiting to "grow out of it"?  Who do we look to for strength in times of utter frustration?

I hope you'll follow us and post feedback, questions, solutions, funny anecdotes.  We'll be happy to have some company.


2 comments:

  1. As incredibly hard as all of this working-to-fix-it is, I feel so happy for the both of you that are you doing this now, while he's 2, rather than when he's five or seven or twelve and you've all endured as many years of struggling. He is so lucky that you won't stand for "par for the course" and that you're going to do what it takes to get him well!

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  2. I am glad to have this perspective. How difficult it must be! It helps me step in your shoes for a bit. The diet would be tough, really tough for me. Praying for you, today, Wren. Keep writing through the struggle; it helps.

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