Two years. (more…)
Archive for the ‘Swallow Difficulty’ Category
Father’s Day 2.0
Monday, June 18th, 2012Deglutition
Thursday, May 10th, 2012Wikipedia 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. (more…)
Medical Stuff
Friday, July 29th, 2011Summer 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. (more…)
De-tubified
Monday, May 2nd, 2011
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. (more…)
Maintenance
Sunday, April 10th, 2011As 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. (more…)
Hip hip, hooray!
Saturday, August 28th, 2010Good 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. (more…)
FOOD
Sunday, August 22nd, 2010I 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?
Everyday, we in the West are presented with a bewildering variety of colourfully packaged and mostly synthetic foods from which to choose, and the industry of modern food production is destroying the environment. The choices we make have ripple-effects far beyond our own families, forcing us to analyze everything we put into our bodies. A large part (ha) of the population is ballooning bigger than ever before, while many others choose not to eat at all, in a bid to satisfy some deluded standard of beauty.
Hope
Wednesday, June 30th, 2010I’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.
But. Then we realized that his swallow reflex had been effected by the surgery, we hope still that it will return to him in time, it just may take quite awhile and some intensive therapy. This means that he cannot eat or drink except through an NG tube in his nose.
Then. He started exhibiting strange behaviour and was clearly in pain. An emergency trip to CT showed hydrocephalus, a build-up of fluid in his brain. His EVD, which drains excess fluid from his brain, and that we had hoped to remove already, was not working well enough. His oxygen levels were low, and he needed to sleep with an O2 hood on for a couple of nights. The danger of hydrocephalus has passed as long as his drain continues to work, but he spent two sleepless nights before recovering.
And then another CT scan showed us the next nightmare – a blood clot in the middle of his brain. “We are on the knife’s edge right now,” said one of the neuro team. As I’ve said before, no sugar-coating this stuff. Our only recourse is to give him blood thinners, a bloody dangerous thing to do six days post-op. Then the neuro team felt that he would benefit from having a PICC line put in, a kind of permanent IV in his arm. Yet another dangerous and invasive procedure for him to go through, but he survived it, and is on his medication, and we will this clot to go away.
And now we watch, and wait, and hope, and hope to get through another night and another day.