Sunday, 5 July 2015

The penthouse

From the plane to the ambulance to the hospital to Room 1124 seemed like a walk in the park compared to the next 24 hours.

Part of his trouble was breathing. So a portable X-ray machine came. I had to hold him in place, screaming while they took the image.

Then he had a fever. Plus evening medicines. He threw them all up and an hour later we finally got them down, making sure gravol was the first.

One of his two broviac line ports was blocked, so they had to put an anticoagulant through it. He vomited again. One of the two nurses and I shot our hands up to catch it as the other nurse continued the delicate procedure.

Then he needed platelets, but there were no properly matched ones available. So he got plain ones, which didn't help. His leukemia blast count shot up and we re-started oral chemotherapy.

Diarrhea, screaming and fear marked the rest of the night.

On Saturday his breathing rate was up around 80 per minute (20 is normal), and the X-ray came back showing signs of pneumonia in his right lung. Morphine didn't help slow down the respiratory rate, and soon we were talking to teams from the ICU about potentially taking him there.

Trish went to go get some food. Then the head ICU doctor visited with her team. A half-dozen people and me talking about how they didn't think it was worth it to have Dom - already a miracle after six months of being diagnosed as terminal - come to them to be sedated or helped in any way.

Basically, the same point of view as the doctor in Medicine Hat. To be fair, we don't want him in ICU for his final days.

But that doesn't mean he might not beat this pneumonia. So our doctor changed up the anitibiotic mix, stopped his feeds to give his tummy a rest, and called it a night. We lay in beds, popping up at every cough, every whimper, worried that this would be the final downturn.

The key there is we both got to stay overnight. In the past only one of us could, as there is only one couch per room. But in 1124, there's an extra door... that leads to Room 1125. It's effectively a double room, the penthouse suite of the Alberta Children's Hospital.

Trish considers the room ominous. The death room, because they know you'll have lots of visitors. But it also means you can close the door, hang out and chat in the second room without waking Dom from his naps. And there's a fridge, microwave, tables and bathroom. We brought a baby monitor so we can see how he's doing too.

He made it through the night. His respiration rate has dropped to 40 and he's needing less oxygen to breathe. We're seeing a lot of familiar faces in the nursing staff which helps relax us. 

Things can now go one of two ways. Either the anitibiotics work and we get the pneumonia under control, or things get worse, quick. But he was up dancing again this morning, thumbs everywhere, waving at staff and demanding water breaks.

As Trish said last night, "six months may be good, but even six years wouldn't be enough." For now, the next six days will determine a lot.


  1. Keep fighting thoughts and prayers are with you all.

  2. Wishing you all the greatest of strength. Many hugs...

  3. Thanks for the updates, hoping for lots of recovery and strength over the next few days.

  4. Keep on fighting Dom! Sending love and hugs!!

  5. Like all the others reading these recent posts, hoping Dom can fight this and that you have many more happy and memorable days ahead. Sending much strength and warm thoughts your way,

  6. What an amazing kid. What a wonderful family. You are showing everyone how to live, how to love and how to fight for what's really important. So much of the crap we worry about and struggle with doesn't even matter, and you prove that every time you post. Thanks for the updates. They mean so much.

  7. Keep fighting... Don't let the hospital staff discourage you. Praying... I hope he can get over the pneumonia. Thank you for taking time to post updates.