July 4, 2015

Hi all. Turns out Ollie has an infection in his central line. He is being given IV antibiotics and we hope will feel a bit better. Today we were at Sick Kids all day for two doses of IV antibiotics, platelets, blood and Lasix.

Ollie slept all day. He is becoming increasingly swollen from all the fluid his body is retaining, in spite of the Lasix. By the end of the day he looked like a boxer who has gone a few too many rounds. It is very upsetting to me, and uncomfortable for him, but I’m not sure there is anything that can be done.

Anyway, by the end of the day he was watching his tablet, talking, and asking for food. He was also a grumpy little bugger, but we’ll take it.

Yesterday, Stu went to see a paediatric hospice called Emily’s House.

http://www.philipazizcentre.ca/emilys-house/

He really liked it. I didn’t get to go, because I couldn’t leave Ollie, but hearing so much from Stuart and from our PAC Team, and having driven by it countless times, I trusted that it could be a good option for us.

I knew all day that Stu was convinced EH was the place to be. For me it was a day of agonizing over the decision. Should we stay at the hospital, where we know everyone, and it’s familiar to us, but Ollie hates it? Should we go home, where we are burdened with the lions share of nursing responsibilities, cleaning up, doing laundry,etc., the last few being at least distractions, if nothing else. And where we would receive the least amount of support medically speaking. I have already experienced a fair amount of panic thinking of when things get really serious. We don’t know what could happen; there could be seizures, bleeding…

I cried on the shoulders of the two fantastic nurses we had at Sick Kids today, too many times to count. I spoke to Dr. Kevin, our PAC Team doc on the phone a bunch of times. He knew that EH would be the right place for us and I finally agreed to try it. If Ollie is well enough to protest in the coming days, then maybe we’ll go home for a while, but he has already declared it “better than Sick Kids”, thanks in no small part, I suspect, to the superior WiFi.

So we are settling in here now. We have a lovely room with a beautiful fireplace and a porch. The staff here will make anything happen for us. They will feed us, do our laundry, whatever we need. It is in our neighbourhood, which is very reassuring.

All that being said, we are here to see the end of our son’s life. I am very angry at the unfairness of it all, but I will do anything to ease his pain and see that he knows no fear. That is an honour and a privilege, and my duty.

Also, I am scared shitless, and an emotional wreck. Don’t mistake my posts for strength. They are cathartic for me, but I’m still losing my shit here.

Xo

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