Medications

Life seems to be hurtling past at a great velocity. Days and weeks blur and blend together, leaving me wondering, really, where does the time go?

We’ve now just about reached the first anniversary of Gavin’s return to wellness. I hesitate to use the expression “wonder drug,” but Gav’s medication has been life-altering for us. He hasn’t had a visit to the ER since last January. Going back over old posts, I see that February of last year was horrendous. Below is Bean’s report card from December of this school year. He went from missing over 20 days of school in the first term of 2014, to missing none in 2015. None!

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.

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.

Over the last week, we have slowly climbed the oxygen ladder, using ever greater amounts and ever more complex machines. It is with caution and relief that I can say we are beginning the descent, rung by rung.

We started at blow-by, and proceeded to prongs, mask, skipped C-PAP, went to ventilation, and then the oscillator at 90%. Gavin is now off the ventilator, and is on C-PAP, which means that he is breathing on his own with some pressurized oxygenated air being blown through the respirator tube.

I thought I’d take Erica up on her offer to post on her blog. Our lives have certainly changed a lot in the past three months and my role has become that of Medicine Man.

Gavin receives a dizzying number of medications now, and we quickly realised that the more of them that we can administer ourselves, the more freedom we would have.

When we’re at home a nurse comes by each day to flush his central line and do any other maintenance tasks that need attention like dressing changes etc. Of course that means we need to be home instead of out in the world enjoying our hospital-free days. We wanted to go away for a night over the Labour Day weekend so I had to learn how to do most of his daily nursing tasks.

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.