Finally!!!

A little more than 3 years ago, late November 2009 to be exact, Keegan became very ill.  He awoke in the middle of the night with a croup sounding cough.  We took him into the bathroom and ran the shower hot and ran the humidifier on high hoping that his breathing would improve.  We called the doctor on call and she could hear him coughing over the phone.  She assured us that it was a case of croup.  Keep up with the steam treatments and call in the morning if things didn’t get better.  Hind sight being 20/20 we should have packed him up right then and headed to the ER.  At the time we were following the doctors orders and trying to get through the night.

The next morning at precisely 8am I was on the phone to the pediatrician’s office begging for the first available appointment.  The woman on the other end of the phone asked me how fast I could get to the office – there was an opening and I think she could hear the impending panic in my voice.  I told her we lived only 10 minutes away but I would have to drop my other child off.  She said be here in 20 minutes and you will be seen.

I rapidly packed up the boys and headed off to my amazing in-laws house.  They graciously took Eli so I could focus on only one child during this visit.  Keegan’s breathing was worse.  He was wheezing and barely able to catch a breath of any kind.  I expected a one way trip to the hospital.  He never received a diagnosis that day, though I’m convinced it was the dreaded H1N1 that was running rapid that fall.  What he did receive was a rescue breathing treatment in the doctor’s office, a nebulizer with albuterol AND pulmicort, a lovely pink bottle of antibiotics and another of steroids, and a week off of school.  I think he stayed out of the hospital only because the doctor didn’t want him to catch something else and get worse.

Upon his recovery from this crazy illness he never went back to normal.  We spent a lot of time in the pediatrician’s office that winter and spring.  Each time he started with the croupy cough and we packed up to the doctor’s office the next morning.  After about the 4th trip that included steroids, breathing treatments and antibiotics we decided enough was enough.  We couldn’t keep doing this.  It wasn’t good for Keegan.  I scheduled a sit down with our regular pediatrician and decided we would make a plan.

That sit down happened in June 2010.  We had a great discussion around all of our visits to his office, the various medication regiments we had tried and the multiple failed results.  We started giving Keegan singulair daily and kept albuterol on hand to use as needed if the croupy cough returned.

Things were great for about 6 months.  He was pretty healthy and we felt like we were on a great path.  Then the weather changed and the bottom dropped out.  We were doing breathing treatments at least twice a day and were back to being in and out of the doctor’s office.  In the spring of 2011 Keegan had pneumonia and got an official diagnosis of reactive airway disease.  We changed when he was getting his singulair and his regiment of albuterol.  Once again we added steroids and antibiotics.  We had another discussion about what was going on and what new path we needed to go down.

We saw a GI doctor thinking maybe reflux was playing a role in some of his sleeping and breathing issues.  The doctor asked his symptoms, I shared.  He looked at me point-blank and said there was nothing wrong with my son.  I had brought him to the wrong place.  We grabbed our things and headed down a different path.

We saw an ENT and scheduled for his tonsils and adenoids to be removed.  This occurred in August 2011.  He started sleeping better through the night and appeared healthier.  Again, we thought we were in the clear.

Then he ended up with pneumonia two more times.  Thankfully he didn’t require hospitalization any of those times.  Still he couldn’t breathe well and that is scary has hell.  Time for a new plan – this time a plan that would keep pneumonia out of our lives for good.

Thus started the year from hell of medication changes and regiment changes and ups and downs in breathing.  A year that included another bout of pneumonia.  A year that included a weird allergic reaction to something spiraling us into allergy testing and adding yet one more medication to our regiment.  A year where we revisited the reflux concern and watched the pediatrician’s eyes grow big and recognition strike.  A year where we learned about the extreme correlation between untreated reflux and reactive airway disease.  A year where my sweet boy had to endure a pulmonary function test.  A year where (fingers crossed) we finally go some answers.

The pulmonary function test showed that yes, he truly has reactive airway disease.  He is currently on a twice daily pulmicort inhaler, once daily singulair and as needed albuterol inhaler with that albuterol nebulizer still hanging around for those just in case really bad times.  We added reflux medications in November and saw some improvements but not what the doctor said we should see.  We switched medications in December and saw changes almost instantly.  So, he now takes that once a day.

Today we had a follow-up with the pediatrician to discuss this regiment that we have been doing for a full month.  I was itching to get there to share our news.

I was down and out with a wicked cold/sinus infection last week.  Keegan will catch a cold faster than… well, wicked crazy fast.  Needless to say, he caught my cold.  He was a little sniffley after diving on Wednesday last week.  He was complaining of water in his ears.  We did ear drops, we busted out the brand new humidifier and filled the steam spout with liquid Vicks.  We rubbed Vicks on his feet and put on his favorite fuzzy socks.  We even managed to bribe him into doing a Neti Pot.  We crossed our fingers and hoped for the best.  He managed to sleep throughout the night but his sleep was restless.  He awoke the next morning sneezing and coughing and red-eyed.  His breathing still seemed ok but I put the pediatrician on speed dial just in case.  That croupy cough should be starting any day now.   Only it didn’t.  At all.  Sure he kept a snotty nose for several days and maintained a cough from constant sinus drainage.  But it started a cold and stayed that way.  No pneumonia, no bronchitis, no breathing issues.  Period.  I’ve been holding my breath all week waiting for the ball to drop and it hasn’t it.  Something finally worked.

The doctor checked him over today.  Ears were clear.  Nose and throat looked great.  Lungs sounded fantastic.  Cue the lights and sirens Vegas, we have a winner!!!  I have never beamed so much over something medical.

I hesitated to ask about when we could consider reducing the medications but in the end couldn’t help myself.  All of the literature I’ve been reading stated that if the issue truly is reflux then a lot of times the breathing meds can be stopped altogether.  For now we will remain status quo – crossing our fingers that we get through the rest of this season symptom free.  After the spring thaw we will begin to reduce some of his medications and monitor him closely for the results.  We will hope that he can reduce or eliminate most of his medications.  Still we are thrilled that no matter what we have found something that is finally working for him.  My baby can breathe and there is little more precious than that.

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About Brotherly Love

I am a mom, partner, teacher and a lover of life. I have two fabulous boys who define my life as I know it. One of my children has been diagnosed with a sensory processing disorder, Asperger's and anxiety disorder. I blog as much about him as I do about my life and the lives of my immediate family.
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6 Responses to Finally!!!

  1. What an ordeal! So glad you finally got some answers!

  2. Debbi Henry says:

    First…wow, I didn’t know Keegan had this much trouble!
    Second….His story sounds so much like Gracie’s!! Pulmicort, xopenex, and antibiotics. Rinse, lather, and repeat. Reactive airway disease, hyper actice airway, pre asthma, etc. Last night, we talked to our doctor and he is having us start singulair. I have never heard that untreated reflux could be the cause of this. Is it that they are aspirating the reflux? I guess I will have to look into this more…

    Thanks so much for sharing this info and I am so glad that your precious boy can now breathe easier! What a relief!

  3. Elastamom says:

    I am sooo happy!!! I’m going to ask my pediatrician about it today for Matthew.

    • I hope your pediatrician appointment went well! It was a long shot for us but was the best thing that could have happened. Now I’m looking forward to weaning him off of medications and crossing my fingers that it works for him.

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