February 28, 2011- one year ago

Zack was so sick.  

It had been days since either of us slept and I was a zombie.  We had been alternating between rocking in the glider while I hummed “Elmo’s World” or snuggling in our bed watching multiple Elmo episodes on the PVR.  I could tell that he had what “could” turn out to be pneumonia, so I increased his asthma masks.  When we woke up that Monday morning, I knew it was time to see our doctor. There was no mistaking the shakes and racing heartbeats that came with his fevers and he wasn’t eating again.  I was worried to give him a gtube feed, in case he threw up, so I just gave him fluids, anti-seizure meds, reflux meds and made the appointment at his doctor.  They were always so wonderful to rush us in when I called.

It only took a minute for the doctor to tell me that it was bad, it was pneumonia and it would require a hospital stay.  I hadn’t really expected to have to go to the hospital.  It didn’t seem nearly as bad as other times.  He said that he would try to get a bed for us…but that our local hospital was very busy.  We were told it might have to be the next day.

How could it have gotten so bad, so fast?  Unfortunately, this was how it was with Zackie…a cold could quickly become dangerous overnight.

I spent the day working on plans to get our things packed and to make the calls to find out how we could manage the other boys and our trip to the hospital.  The problem was that my parents were in the Dominican Republic for another week and my mom was always the one who would come to our rescue at the last minute.  I really missed having her around that week.  She would always make the boys feel so special and would keep their routine the same so that during our hospital stays, their lives seemed relatively unchanged.  They also loved having her around for sleepovers!  We packed the usual things, Elmo DVDs, his Elmo dolls, my flipflops, clothes, cans of pop and granola bars for me.  I packed his Gtube equipment and his meds.  I hated going through the list of meds and waiting for the pharmacy to get it right, so I liked to bring our own from home.  I would have to refrigerate one of them, when we got to the hospital.

Later that day, we learned that our local hospital, York Central, was full.  Even our favourite nurses and clerks couldn’t get “their Zackie” a bed.  So, this meant a stay down at SickKids and a stay far away from my other boys.

By the end of the day, with the help of amazing friends and neighbours, we had figured out how to get the boys to and from school the next day.  Zack was really miserable and lethargic and I didn’t want to wait for the morning.  When Paul got home from work around 7pm, I jumped in the car with Zackie and drove him down to SickKids- I had no idea that this would not only be our last ride in my car, but the start of the last days of his life.

They rushed him into a room in the ER after I gave the rundown of his cardiac history.  I was really pleased that they took us before the ear aches and urinary infections that filled the waiting room.

Zack’s fever was high.  Really high. They got the best IV nurse to give his very small and tricky veins his first poke.  Once he was hydrated, they did their best to get the xrays they needed and to find him a room on one of the units.  I saw his xrays and had learned that the white hazy parts were the areas of infection.  It didn’t seem all that bad to me, so I wondered what else could be causing this fever.  He was going to be in for a few days for sure, they had told me.  I was so tired and I remember looking at myself in the mirror and being shocked at how old I looked.  I was pretty good at functioning on the lack of sleep that we had gotten used to, but this seemed different.  I was actually a week over a strep infection myself and I was worn down.  All that matter though, was getting Zack back to himself.  He was so tired, so sick and had no energy at all.

We spent the long, sleepless night either snuggled on his very thin gurney, watching Elmo DVDs or colouring.  Every time his fever spiked, he would lose energy and want to sleep.  I could actually see the changes in his demeanor before it happened, so I would call the nurse to give us his Tylenol fast!  We even tried bags of ice under his arms and on his head to bring down the fever.  Sometimes I would just put my head on the side of his bed to try to get a few minutes of sleep for myself.  We were anxious to get into a room, stabilize his temperature and find out what the course of treatment would be THIS time….I had no idea that THIS time was so very different from the rest.