Last year, when Fehmeen was about five months pregnant with Emma, I vividly recall wandering around downtown Burlingame, window shopping all the cute baby clothes stores. The storefronts were awash with the latest Fall fashions and I remember entering one particular store and perusing their infant Halloween costume collection. We saw a fluffy duck costume, an adorable octopus costume, a spicy tamale costume and even a “mustarded” hot dog costume. We debated purchasing one of them at the time and saving it for the next year but, in the end, we chose to leave the store empty-handed.
Fast-forward a year to last week when Fehmeen and I revisited the discussion about Emma’s Halloween costume. She wanted to see our sixth month old in an octopus outfit but I really wanted to see the Bug in a hot dog suit. We researched online a bit, found a few possible contenders, but we wanted to hit the stores in person and see what was available there, to avoid the hassle of shipping and to eliminate the possibility of our costume being back-ordered. With our baby’s October 31st outfit acquisition plan more or less set in stone, we moved on with our lives.
This past Sunday, Fehmeen, Emma, and I attended the San Carlos Art and Wine Festival with my Mom and Dad, my Aunt Nancy and Uncle Mike, and my cousin Adam and his fiance, Sarah. We parked at Nancy and Mike’s house around 1 pm and a majority of our group walked the three blocks to the street fair. (Emma and I rolled; she in her stroller, me in my wheelchair). The sun beat down relentlessly on Laurel Avenue as we joined the shuffling masses ambling past enthusiastic vendors peddling their wares.
After about an hour of gazing at booths teeming with oil paintings, children’s puzzles, tie-dyed shirts, hemp purses, and new-age music cds, we decided it was time to eat. I hadn’t eaten since early morning so I enthusiastically began to devour the hot dog that was given to me. With my particular brand of ALS, one of the issues I have when eating is that my tongue has a difficult time moving food from one side of my mouth to the other while chewing. Although not a common occurence, I have found that this particular situation usually presents itself when the morsel I am chewing is on the large side.
There was the perfect storm brewing that day in San Carlos, the City of Good Living. Because I was practically famished, because my tongue doesn’t work properly, and because I was taking recklessly large, competitive eating sized bites of my hot dog, I knew, in an internal dialogue going on in my head as it was happening kind of way, that I was in some serious trouble the second I tried to swallow. The bite wouldn’t go down. I attempted to swallow again but the piece of hot dog in my throat was not budging. I signaled to Fehmeen that I was in distress and my Uncle Mike came up behind me and attempted the Heimlich maneuver on me, with no success.
As coincidence would have it, we chose to sit near the San Carlos Fire Department’s booth. After the valiant attempt to dislodge the offending foodstuff from my throat had failed, I suggested to my family by grunting and haphazardly pointing in the direction of the fire truck that we should recruit some reinforcements to aid in my rapidly escalating situation. When the cavalry arrived, they asked me if I could breathe (yes), if I have any health issues (well, I have ALS), if I have any other health issues (are you freaking kidding me), and if I was on any medication (yes, lots). Then they called for an ambulance.
Apparently, because I was still able to draw air into my lungs, there was nothing they could do for me right then and there. To me, that was not really the solution to my problem that I was looking for so I decided to try and resolve it myself by forcefully trying to swallow the hot dog down. Every time I would attempt to swallow, though, my throat would make this loud, scary, gurgling sound and all the saliva and mucus that usually goes down remained in my mouth. A gullet full of snot and spit, coupled with the ever-increasing anxiety I was feeling because of my inability to swallow, I began gagging, rather loudly and frequently, as I tried to expel the nastiness from my mouth.
Somewhere around the fourth or fifth futile attempt at self-clearing my heavily congested throat, the paramedics arrived. They asked the same questions and drew the same conclusions that the previous rescue party came up with: because this guy is able to breathe and nothing is in his lungs, there is really little we can do to give him some relief. I don’t know if I was being unreasonable here, but I was kind of hoping that someone could maybe help me remove the ginormous chunk of hot dog that had taken residence in my neck.
I swallowed, gurgled, and gagged a few more times until someone suggested an ambulance trip to the hospital might be a good idea. I took them up on their offer. It was the longest and slowest ride of my life. Under the speed limit, no blaring sirens, and stopping at every light was the order of the day. We even stopped for a goddamn train. I violently gagged my disapproval.
When we arrived at the Redwood City Kaiser Emergency Room, I was wheeled in to station number six where we waited for about fifteen minutes for a nurse to inform us that a doctor would be with us soon. He confirmed that I was still breathing, hooked me up to the blood pressure machine, and provided me with this suction device to help me out with my saliva and mucus problem. About forty-five minutes later, we were seen by the doctor who, surprise, surprise, confirmed my breathing and informed us that the hot dog was stuck in my esophagus (and not my windpipe, thus explaining my uncanny ability to continue breathing). She had ordered a barium swallow study in radiology to determine if an ENT or a GI doctor would be removing the blockage. She informed us that the study would be happening soon.
An hour of swallowing/gurgling/gagging later, I remained on the gurney in station six, still awaiting my turn in the x-ray room. Just as I was about to eclipse the breaking point on my personal frustrating yet there ain’t a damn thing you can do about on several levels scale, I swallowed sans distressing gurgling noises. I tried it again and the result was the same; a clean and unblocked swallow, not the usual grilled hot dog taste that I had been experiencing for the past three hours.
I told Fehmeen what had happened and she made me swallow about a dozen more times for good measure. When the doctor reappeared, we decided to go through with the barium study anyway, just to make sure that things were in good working order (or at least as good as they can be for ALS Boy). I will spare you most of the details from my radiology experience suffice to say that, in my limited experience, most non-ALS specialist doctors don’t know jack shit about ALS and what it does to it’s sufferers. After the smoke cleared and the requisite apologies were extended, it would probably be safe to assume that I won’t be attending their department’s holiday party this year.
The last thing to do, prior to being discharged, was to review the findings of the study. The doctor told us that the liquid tended to pool up in my mouth before trickling down my throat, a finding consistent with bulbar onset ALS. After I vowed to take smaller bites of my food from now on, we were free to leave and continue on with our regularly scheduled day.
As we drove back to San Carlos, Fehmeen asked me how I was feeling. I told her that I was hungry but I would never again eat another hot dog as long as I lived. In fact, there was no way Emma was going to be dressing up as a hot dog for Halloween, either. Even though the costume was my idea, I officially pulled the suggestion off the table. Sorry, Emmabug, but the wounds are still too fresh for your dad. For the record, Emma will be dressed like a pea in a pod for Halloween this year. That is unless I gag on a pea between now and then.
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