Exercising Outside

Today was such a beautiful day, we decided to take Stellan’s gait trainer out for a spin on the sidewalk instead of using it inside the apartment as we usually do. I’m sure we were quite a sight to behold, especially once I started dancing and marching in front of Stellan to encourage his steps, but I don’t mind if the neighbors or random passers-by think I’m a little off my rocker. Stellan walked – with lots of help of course – from in front of our building to the entrance of the building two doors down. Probably thirty feet!

I’m hoping one day we can get him all the way to the corner to surprise the flower guy and the owner of the corner store, who have only ever seen him in a stroller or carried in our arms. Baby steps…

Breathing Update

One very valuable thing I’ve learned through having a child who has to see a lot of medical specialists with long wait times for appointments? Ask to be called if anyone cancels. Because they do, and it means an appointment set for a month away can suddenly be an appointment the next day. Which is what happened to us today.

I had set an appointment for a new ENT to check on Stellan’s scary breathing for August 18th, his first availability for a new patient. But while making the appointment, I asked to be notified of any cancellations and I was put on a waitlist. Low and behold, Friday evening at 5pm I got a call saying I could come in first thing Monday morning. So there we were at NYU at 8am today. (The logistics of which would require another post altogether, which I’m not sure I’ll ever write…)

The new doctor was really helpful and kind and not at all condescending as I explained my concerns and my theories about why Stellan’s breathing had suddenly taken a turn for the worst. He agreed that Botox injections in his trapezius (shoulder) muscles could definitely have had an adverse effect, and said that another laryngoscopy might be in order, but was able to to an in-office check first.

This, of course, required placing a thin tube with a tiny camera on the end into Stellan’s nose and down his throat. I’ve never had this done to me personally, but I can only imagine how awful it must be (and also reminded me I’m glad we skipped the N-G feeding tube option), and Stellan definitely hated it. The good thing was that it was over quite fast – within 60 seconds – and would’ve been even faster, but Stellan has a tendency to hold his breath when he cries, so it took extra time for his airway to open up for a good picture. The other good thing is that the doctor recorded everything so we can compare with another video we’ll take in a few weeks time when we go in for a follow up.

Because it turns out that Stellan’s tonsils and adenoids are both quite inflamed, particularly the tonsils. And that is definitely constricting his airway. Why does this make me happy? Because this is a “normal kid thing” and normal kid things are often things I forget about since we unfortunately have to deal with so many non-normal kid things with Stellan. We often assume the worst, when there could be a simple explanation like teething or tonsils.

So we have been armed with medication to try to shrink both the tonsils and adenoids (a little spray into the nose on a nightly basis) and we’ll see the doctor again when we had our original visit scheduled in mid-August and hopefully see some progress. If not, it may be time for the little man to have his tonsils out. And in the meantime we also have some ways to help improve his breathing through better body positioning and simply reminding him to take deep breaths – something he kind of forgets to do when he’s concentrating hard on doing something else like using his hands.

All in all, I’m tremendously relieved. At least for now!

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.