Swallow Difficulty

Bean and Daddy Airport Antics

Two years.

Two years ago on Father’s Day we took our beautiful child to Sick Kids in the evening. We were worried, concerned, alarmed. But we had no idea that the tank headed towards us was about to flatten us in its tracks. The innocence of the time before is something I’ve longed for in the past two years. There have been times that I have felt physically sick thinking about the day of Gavin’s diagnosis, wishing I could unhear the words, “Gavin has a brain tumour,” that Craig had to whisper in my ear in the ER, as I returned from getting a coffee.

Wikipedia informs me that “deglutition” is the scientific word for swallowing. Huh. You learn something new every day.

We had an appointment with the feeding clinic at Bloorview earlier this week, which explains why I’m parsing Wikipedia entries on swallowing and dysphagia. You may remember that Gavin continues to suffer from slight dysphagia. (swallow difficulty.) His last hurdle is thin liquid. Although it is counter-intuitive, thin liquids like water or apple juice are actually the most difficult things to swallow with Gavin’s condition.

Summer is slipping through my fingers as it always does in Canada. Winter is eternal and the short weeks of summer fly past before you’ve got a chance to breathe. I have not been blogging much of late because we’ve been out enjoying the ridiculously hot weather we’ve been having, and spending a lot of time at Bubby and Da’s cottage in Muskoka.

There have been a few changes of late in Gavin’s medical status, which those who follow his story or are going through treatment with their little ones would be interested to know.

Let the sun shine in

Notice anything different? After over 10 months of tube-feeds, losses, insertions, swallow studies and endless rolls of medical tape, we have come to the end of an era.

Two days ago, the Bean’s Daddy and I came to the mutual conclusion that Gavin’s NG tubey had long outstayed its welcome. We had a brief kitchen confab with Gav, yanked the tube and dumped it in the garbage. My Bean’s beautiful face shines out at the world again, unmarred by hypafix.

As the weeks slip by, we are now beginning to live a somewhat normal life, but also to get a glimpse of what the coming months and years will bring medically. Now we watch, wait and maintain. Gavin is officially out of active treatment and back in the care of the neuro-oncology team. It has been an adjustment leaving our friends in BMT and starting Gavin’s maintenance treatment with neuro-onc. There have been many things to consider for his health, many tests to do, and many adjustments to be made.

Good news. Yesterday Gavin passed his second feeding study, and is now cleared to eat certain textures! For the moment we are limited to thin purées and thickened liquids, but we are all ridiculously over the moon about this new development. Both Craig and I had suspected for some weeks that Gavin was capable of swallowing something, but because of the danger of aspiration, couldn’t allow him to try anything at home.

I often ponder the human relationship with food. Our omnivorous diet is astounding when you think about it. We eat pretty much everything out there, and each culture scorns the dietary choices of other tribes. (“You eat horse? Eeeew!” “You eat pork? Barf.” etc.) Who was the first person to have a crack at a lobster or a chili pepper, and think, huh, not bad! Life would be a lot easier as a koala, munching away on eucalypt leaves and never having to stand with the fridge door ajar going, hmmmm, now what do I feel like eating?

I’ve come to the conclusion that the human body just can’t sustain any heightened emotion for an extended period of time without trying to return to its normal state. Fear, anger, pain, grief - these all fade with time because they have to. Otherwise, we wouldn’t be able to continue to live.

We entered the hospital on Sunday June 20th, 10 days and a lifetime ago. I’ve seen the delerious heights of renewed hope, only to plummet back to rock-bottom the next day as yet another piece of bad news is delivered. Gavin’s recovery was off to a great start, he had an MRI the next day which showed no sign of remaining tumour, he woke right up from sedation, was extubated, and breathed on his own. Then he talked to us and held our hands. Hearing him say “mama” again repaired some broken bits in my heart.