Saturday, May 1, 2010

Airway concerns?

Last fall we thought we might be able to get Elijah off pulmonology's radar, but after many scary croup episodes this winter, he is definitely still on their radar screen. We took him in to see his wonderful pulmonologist (we love this doctor sooo much) and chatted with him about all of the croup he experienced this winter and what it all means.

As he explained to us, nobody knows a whole lot about croup because it is incredibly unsafe to do testing on an airway when it is in the middle of a croup episode. And because a lot is unknown about it, well, there isn't much to do besides deal with it once it arrives. Great! We already knew this, though, and it is the reason we have such a good plan of attack when croup does arrive.

The severity of Elijah's episodes, although considered "severe," are not what concern Dr. K. It is the frequency of the episodes that concern him. Why, oh, why is our little boy getting so much croup? That is a very good question that apparently has no answers. It could just be because he is simply prone to it and will be for a few more years. Or there could be something else going on in his airway.

Almost three years ago Elijah had a bronchoscopy done to explore his airway because he was a "squeaky" baby. He sounded like a squeaky wheel when he breathed, so the ENT put a scope into his airway and found...nothing. His airway was completely normal. The squeakiness apparently had no cause and it eventually went away. Since Elijah has been intubated so much, though, Dr. K thinks it might be worthwhile to do another bronchoscopy to make sure nothing has happened to his airway since then. Dan and I really don't feel like there is anything wrong with his airway. Our instincts tell us that he is just prone to croup for whatever reason and will eventually grow out of it.

A bronchoscopy means more hospital time and more sedation and more anxiety and all of that fun stuff. The ONLY thing that makes me want to go against my gut and get the surgery done is what happened a year ago. I strongly considered going against Elijah's neurologist's recommendation to get a brain/spine MRI because I didn't feel it was necessary. We did go ahead with it, though, and it is a good thing because it caught his tethered spinal cord. So we shall listen to our very smart doctors and do what they suggest, I think. We are waiting for Dr. K to collaborate with the ENT doctor and get back to us about a recommendation.

It's funny, I literally just had the thought this week that we could possibly go this whole year without a surgery (minus a heart cath, of course). This is what I get for thinking such things!


Amber said...

Oh my goodness momma...I hear you!
Bottom much as we want it to "be over" or resolve "unless it is obviously life threatening"'s just not that simple/easy is it?
Why oh why...can't we have a little window into our kiddo. Maybe even a type in the symptom and it prints out the problem or lack of! Of course the window would be from we can barely stand to do what is medically "necessary".
I know too well that feeling of "not one more thing!"...well, unless we have to. :0( I feel like that's where I am with Grace right now. I absolutely DO NOT want her going through more than is absolutely "gut" is unsettled. EVERYTIME we hear her breathing so heavy...and see her melt down from fatigue...I want to come unglued!
It's a crazy line we walk as parent, advocate, protector...mommy.
Keep us posted!!!
P.S. I ate a tiny bit of Ben and honor of you and Zoot

Cecilia said...

I hope the specialists can sort out Elijah's problem as soon as possible.

Sending our love and blessings your way!

Have a nice week!

Lee Family said...

I hope the Doctors can figure this out, Poor guy it would be very sad to go for another Surgery. I will keep Elijah and Mama in our prayers.

Hope you have a nice week.

Sarah said...

It's always something, eh? I know... Prayers for the Dr.'s and their decisions and for you and peace with whatever the outcome is.

The Exalted Potentate said...

Our 16 mo old son (also ToF/PA/MAPCAs) had a bronchoscopy following a thumb surgery in March when they had trouble intubating him. He wasn't "squeaky" but always had stridor issues after extubation. They found that he had subglottic stenosis, about 50% airway narrowing, and his cardiologist attributed it to multiple intubations in his life - my count is around six or seven. The course for now is to try to let him grow out of it, but if it had been much narrower they might have opted for a balloon dilation.