March 2, 2011- one year ago

I can remember physically seeing the decline in my sweet brave son starting that day.

It was apparent that the antibiotics were not working and now it was becoming clear that it was likely a virus or something else at play in his fragile body.  The doctors visited hourly it seemed, trying to find what might work to help my sweet son.  We had specialists from many disciplines check in on Zack to see if they could shed light on his medical condition. The doctors on the floor decided to do a nasal swab to check for viruses.  I was hoping that we could get results and then move on to a different course of treatment.

We were still fighting the fever that came back every 4 hours.  It was as though a wave would wash over him.  He would be sitting up watching Elmo, then start to have mild shakes and a racing heart beat.  I learned how to use the thermometer on the wall, and would check him regularly to see if I could catch the fever just before it started.  We had bags of ice ready to put under his arms and on his forehead when it hit.  After a few battles on the drug protocol, I had now convinced the nurses that we needed to give Zack both the Tylenol AND Motrin at the same time, in order to get the fever down.  It was draining him and preventing him from fighting the infection.

I remember there were fewer moments of watching Elmo and even playing his beloved drums.  A few times, Zack would play with his favourite Elmo toy, by grabbing poor Elmo’s eye balls and yanking them back to hear the funny giggle.  When he slowed down to rest, I would climb into bed with him, close the lights and we would have a sleep together.  I was so exhausted from long nights of fevers and loud beeping from the monitors.  When the fevers hit, we got cold towels and I removed the sheets to cool him off.  I wanted to wrap my arms around him to protect him, but even his mommy’s arms would make him too hot.

My sweet niece, Makayla and her mom, Denise, came to see us that day, as they had appointments at SickKids as well.  Only meeting them in August, Denise and I had become amazingly close friends and supporters.  We were both mothers of children with special needs and we connected on such a deep level.  We each knew what our lives were, both the hardships and the great joy.  Having them in our lives, was a wonderful gift- our children truly brought us together.

Denise, her sweet friend Gary, and Makayla brought me lunch and stayed for a visit- it was so awesome to have company and something to eat!  I hadn’t had a chance to run downstairs at all, and I was living on pop, tea and junk food.  We watched some t.v. together and I remember Makayla really being fascinated with Zackie. She would call him “baby” and rub his back.  It was so incredibly sweet to see them together.

My parents were still in Dominican and they felt awful about being so far away.  While there was nothing they could do about it, I did miss having them around.  They emailed several times a day and I got to speak to them too.  It was nice to hear their voices.  If I had known how bad things were, I would have done anything to get them to come home.  I missed Paul- but at least I could see him most days.  He would come over at lunch time to see us, bring me a tea and let me get out of the room for a walk.  He had just started a new job and he was overwhelmed with the new role and being responsible for everything at home.  I missed Jayden and Ty desperately.  I had no idea when I would see them.  Zack was in isolation, so it wasn’t a great idea to have them visit.  I felt so guilty that I had been taken away from them and they were now in limbo everyday, not sure who would pick them up or where they would go for dinner.  Luckily, our boys were well taken care of by amazing friends, especially Smita, Jill and Kathryn.  I don’t know what I would have done without them.

Zack was obviously hungry, in fact, he kept “knocking on his mouth”, which was his sign for “eat”.  I had really given him very little in the way of gtube formula feeds or anything orally.  It was so risky to give him something by mouth- I worried that it might cause him to aspirate and get worse.  He literally reached out and whined to get the pudding and Froot Loops that were on the table across the room.  I wasn’t sure if I should do it, but I gave my son what he wanted.  I knew he was struggling so much, that I hoped some food would bring him comfort, a smile or just some sugar energy.  He ate a few Froot Loops and drooled all over the bed, making a puddle where he sat.  He was happy with his favourite food- I still have that last bag of those Froot Loops.  The one where his sweet hand reached for those round, sugar-filled circles.

Auntie Denise and Zackie, Nov. 2010