A Medical Roller Coaster Ride

Today was a roller coaster. Stellan has been doing a strange, asthmatic-sounding breathing for the past several weeks. Not all the time, but when he does it, it is awful. The kind of breathing that, when you hear it, your own breathing gets all out of whack due to anxiety.

We are switching Stellan over to a new pediatrician after starting Zoe at this practice, so I wanted him to be seen there and the breathing was a good excuse to bring him in.

Since I’m still on baby brain, I had forgotten to make a payment to have his previous practice send over all of his records, so the doctor didn’t have all the background on Stellan. So I gave him a quick background and explained that this breathing thing seemed to have started about 4-6 weeks ago. I was worried it wouldn’t happen in the office, since that always seems to be the case, so I had a video on hand. But just sitting there in my lap, Stellan started his labored breathing and the doctor could hear it immediately.

Since it is a quite recent thing (though Stellan’s breathing has always been a bit rough and gurgly) his concern was that a vocal cord may have collapsed. Apparently in “kids like these” there’s a risk of a vocal cord becoming spastic, which then leads to the cord collapsing.

A horrifying possibility that had never even occurred to me.

So he said that we should have another laryngoscopy done, and then said something like… “We may have to do some sort of intervention, but we want to be very sure first.” Those may not have been his exact words, but I knew what he meant so I said – and I don’t know how I got the words out – “You mean a traecheotomy?” And he said, “Well yes. But we would want to be very sure first.”

I’m not sure how I managed not to barf everywhere or burst into tears, or both. But I kept it together. Maybe because I purposely did not look at my adorable little boy in that moment. Just thinking about it as I right this makes my heart leap into my throat and my eyes brim with tears.

Around that time I heard Zoe starting to cry in the waiting room, where she was with Molly. I realized I had her pacifier so I excused myself to give it to her. While I was out there, I remembered the Botox. Of course!

I went back into the exam room, where Stellan was lying on the table in his diaper looking scrawny and yet totally adorable. I mentioned the Botox injections to the doctor (again, not his fault – he didn’t have all of the background on Stellan yet) and said they’d been done in late April, with the results being strongest 4-5 weeks later, meaning about 6 weeks ago, or around when this breathing thing started.

And to my extreme relief, he said, “that’s almost definitely what it is.” He’d had injections in his shoulders to relax them, as well as in his pectorals, and his head and neck control had gotten considerably worse as a result. He has gained strength since then, through a lot of hard work, but it seems that his breathing difficulties are directly related to the location of the injections. And the sound comes and goes depending on his position, which wouldn’t be the case if it were a collapsed vocal cord.

Despite that good news (or lack of supremely bad news I guess), I have been a wreck for the rest of the day. The emotions are simmering just below the surface and I’ve had a hard time keeping it together. When Quentin got home, I explained what happened and sort of lost it for a few minutes. Which isn’t really a nice way to come home unfortunately.

I think I put having a traech toward the top of the list of “things I never want to have to do to Stellan.” Everything seems to change with that type of procedure and all of the equipment that goes with it. Stellan would appear more “sick” and it would certainly be more complicated to care for him. So I really, REALLY hope we never go down that road.

Of course, if we have to, we will find a way, and we will do the best we can for him and love him just as much as we do now, if not more. I think I do love that little man more every single day. No, I know I do.

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