After 3 Long Years – I Was Right!

I would like to start out by say that for once, at least in this particular instance I AM NOT LOSING MY MIND! And ironically, I have one of Gavin’s new specialists to thank for this (another unusual occurrence).

Let’s take a little journey back in time to February 2014. Gavin (at all of 3 months old) is sent to the ED with respiratory issues. Turns out he has a severe case of RSV (respiratory syncytial virus) and after stabilizing him is taken up to the PICU (Spencer later follows but with a much more mild case – thankfully). Hospital staff had to deep suction his lungs to help him breathe. After a few days and lots of meds (and a lot more suctioning for Gavin) both boys were released. We were told the “junky” sound we heard in Gavin would eventually go away – remnants of the virus.

Fast forward three years and guess what? He’s STILL JUNKY! I never believed that was really a thing – “being a junky kid”. How is that even possible? While no doctor said it outright, they always gave me the look of “yeah – she’s a PITA mom” or “really, we’re discussing this again” when I would bring it up during visits. Yes, yes I am going to bring it up in visits because this was never a thing prior to his RSV issue. I refused to believe that overnight he became a junky kid. And let’s not even discuss when he actually GETS a cold – junky doesn’t even describe it! I couldn’t prove that his RSV and his junkiness were connected but it just seemed too coincidental to me – but not being the one with the Md behind my name I had to go with what the experts were saying.

Three years, numerous specialist visits, every well visit check-up, every ED visit, two sleep studies and a lot of “well he’s just going to be a junky kid” later and we had resigned ourselves to the fact that, he is just a junky kid.  And then it happened. We were sent to a pediatric sleep specialist. Or as I like to call him – my miracle worker. As you can probably imagine, the junky sound that kids get only gets worse at night (when they lay down) – causing sleep issues. With Gavin it’s not just the junky issue that causes sleep problems. Gavin’s CP causes a lot of sleep issues all on its own! His arms moving can cause him to startle and wake up. Having tight muscles can make it difficult finding a comfortable position to lay in or at times move positions. So when his pediatrician sent us to the miracle worker it was for the CP related sleep issues.

In describing a “normal” routine with Gavin the miracle worker had a super crazy, out of the box idea: part of the junky issue we hear could be gastrointestinal. In addition to prescribing sleep meds (THANK YOU DOC!!!) he put Gavin on an acid reducer just to see what would happen. Maybe it would work, maybe not but at least we could check another box in the long list of mystery health issues that is Gavin. Well, I’ll be damned. He’s been on this new acid reducer for about two and half weeks and things have quieted down – CONSIDERABLY!

As the miracle worker has described this, what we’re seeing could have just been a flare up along the gastro track someplace or could be something more serious. Won’t know till the end of the medicine trial in 2.5 months.  The hope is after we ween him off things will be corrected. If not, off to another specialist. Unlike adults or able bodied kids, Gavin can’t remain on acid reducers for the long term as it can cause bone density issues – which is already a concern due to his CP. So fingers crossed this short trial is all he needs.

Still can’t prove that there’s any link between the RSV and his junkiness but at least he is getting some relief and that’s all that matters…..well that and once again, Dr (by proxy) Mommy had it right. There was something wrong. My “mommy-gut” hadn’t let me down.

Next up: getting a FULL night’s sleep!!!!

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