Gavin has been making many little moves over the last couple of days. Yesterday afternoon I popped out with Da and Uncle Duncle to pick out some toys for Beanie’s x-mas gifts, and when I returned I found him decked out in a pair of prongs. We are delirious to say goodbye to the mask.

These are the oxygen mask issues:

1. They do not stock toddler-sized masks, so his didn’t fit.
2. Because it didn’t fit, it slipped into his eyes a lot, or just off his face while sleeping.
3. It is incredibly noisy, and the less oxygen needed, the noisier it gets. Having a conversation in the room became difficult, and hearing Gavin’s little voice over the roar nearly impossible.
4. Water gathers in the tube and adds its own special noise to the cacophony, and then needs to be emptied.
5. Sometimes the water spills out of the tube when Gavin rolled over, soaking him and the bed as he slept.
6. The parent attempting to sleep in the room would have to wake up every ten minutes to adjust the mask, empty the tube, change the sheets or call the nurse.

Prongs are silent. Prongs stay quietly attached to a Bean’s head. Gavin’s sats as he sleeps tonight are a rock-solid 99. I am hoping that over the next few days the need for the prongs will decrease too.

Today Gavin was taken off the ventilator and is back to an oxygen mask again. I was out of the room for the actual extubation but it went smoothly and he has been breathing well on his own since about 1:00, but still requires 50% oxygen.

When I came in he struggled to say his first words in 13 days. His voice is scratchy, rusty, and oddly high after being intubated for so long. Hearing him say a few little words brought tears to my eyes. I hadn’t realized before how difficult it is to communicate with someone who can’t speak. It is especially difficult because obviously he can’t yet write and so kept trying to talk. Heart-breaking.

6 months ago today we came to Sick Kids on a Sunday night and found out that Gavin had a brain tumour. It has been a long, long journey since D-Day. We have experienced incredible highs, like Bean’s very successful brain surgery, and plummeting lows, like our last 13 days in the ICU.

After his tumour resection surgery, we spent two days in the ICU, and as we left, the team saw us off saying, We hope we never see you again.

The first results are in and the scan is clear, clear, clear. There is no sign of tumour, there is no sign of anything that would cause a seizure, and there is no tumour in his spine. Of course, these are the initial results, the official report will not be until next week, but I think we’re in a good place.

We are so tired and emotionally drained from the last four weeks that we can’t even be elated. Both Craig and I are just quietly thrilled. Our world continues the way it is meant to be.

We are waiting for our Christmas present this year. Gavin is in MRI as I write and we are waiting for the news that the scan is clear, no sign of tumour growth, no problems in Gavin’s brain.

Today has not been without difficulty. Despite my resolution to stay positive and think no negative thoughts, it is hard to prevent them from creeping in when you start the day with 24 electrodes attached to your son’s head. Last night our nurse saw Gavin do something strange in his sleep, moving his lips, twitching his shoulder, etc. and decided that he’d had a seizure. I tried to tell her that this has not been unusual for Gavin since he began chemo. I also tried to explain that he had an EEG in the past and had been seen by neurology and declared “normal.” She was pretty convinced that she’d seen a seizure though and reported it as such. I suppose it is her job to report things as she sees it, but it has made my day very difficult.

I will say this with the utmost conviction: Today has been a good day.

This morning Gavin was switched over once again from the conventional ventilator to CPAP settings. This means that he is still intubated but breathing on his own with the help of pressurized oxygen. This is similar to the support people with sleep apnea need. This is a huge step in the right direction, and our support team here are thrilled.

We had plummeted to such a low point over the last couple of days. It was hard to see the good in anything and even harder to muster the courage and positivity that is required here on a daily basis. But with every message from one of you we find that strength again, get up and keep moving. We continue to believe in Gavin. I had to have a stern talking-to with myself the other day because I was tearful and broken, sitting in Gavin’s room and emanating bad vibes. I stepped out for a bit and gave myself a shake. I need to recognize when I’m not helping.

We’ve shed more tears today. More than yesterday, more than Diagnosis Day. Gavin went back on the oscillator around 1am this morning.

It is excruciatingly heart-wrenching to be so close to being free of ventilators only to go all the way back to where we were after the biopsy.

Gav has not been muscle relaxed (pharmaceutically paralysed) like he was last time on the oscillator so he has been able to express his frustration more. The breathing tube is below his vocal chords so he can’t make sounds and there’s nothing more distressing than seeing your child silently cry.

It seems I am not allowed in this situation to say, “he’s getting better”. Of course I am forced to bitterly eat those words just 12 hours later.

Today we started off strong with Gavin breathing on his own and doing fairly well. But a few things plagued him throughout the day. We learned early on that there is some blood in his lungs and we have no idea why. He was sedated but less so than yesterday and often moved trying to pull out his tube. His blood pressure began to go very high and stayed for the rest of the day, and then oxygen levels went low, then resp rate went up. The RTs made a few changes, the fellow popped his head in, but I felt like no one was listening to us to solve these many problems.

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.