The Return of Riley

One of the strangest and most welcome experiences on our return has been to give Sasha complete peace and quiet and normality. We change her IVs in the morning and at night, other than that we get to hear the birds chirping outside and during the last week we have enjoyed sleep ins with our little peach that are blissful.

After CCU, 4D was like a dream. As the nurses do for all longer term patients get to choose a core list of nurses. We took our direction from peach, if Sasha liked a nurse, we liked her.

Our core team was amazing and 4D did their best to ensure Jannele, Grace, Tessie, Julie, Riley, Rebekah, Jozaphine, Sarah, Lauren (to name a few) were available to us. We also had the privelage of meeting many other excellent nurses and nurse practitioners and nurse support, some of whose best wishes are on our website.

The nurses on 4D, women and men, are gentle, confident, positive people and I guess when they are pumping drugs into your daughter's artery you tend to be quite fascinated by their competence.

Riley is a Nova Scotian with a face like an angel who moves with quick bursts of energy. She is intense, quiet, absorbs a lot, always trying to help. Fancy our surprise when she kept in touch by email and then dropped in over the weekend. It was a full house that day and she kept a bit to the sidelines, quietly talking to Sasha on her bed, staying far away from medical talk. It was a neat change of roles and, what can we say, we love Riley! We hope she finds some lucky partner soon because this woman has so much to share.

So The Return of Riley really marked a turning of the wheel, an end to a cycle, a very welcome marker to how far Sasha had travelled. Can never say enough, to the nurses of 4D and 6A and CCU, Thank You Thank You Thank You. And of course the same for the doctors, they have to make the hard decisions, I will write about them another time ;)

So one of the markers of Sasha's journey has been the increasing quiet of her surroundings. In our move up from Critical Care to 4D to 6A and back to 4D we did our best to shield Sasha from unnecessary interventions by doctors and nurses and for most staff at Sick Kids this involvement of parents and respect for patients is part of their patient centred care approach.

However CCU is quiet akin to a war zone, forest fire experience - lots of noise, emergency operations on the bed beside you, constant monitoring and pushing of compensatory drugs, blood tests etc.

The wards are much calmer. Sasha was a bit unusual in that she was still bleeding so there were still daily blood tests and transfusions.

So although we did our best to buffer Sasha, there were always lots of interventions.

For a long while we would get the Gen Surg team at 6am checking in - I would roll over sleepily and mumble something about "output is down" or up or something generic like that. I loved the Gen Surg team. At the bleakest time when Sasha's liver was failing and she was bleeding, a tall Icelandic doctor named Gudrin appeared by our bedside in CCU chart in hand. The feeling was like (and I can only imagine) what a beseiged unit feels when they hear the cavalry or, a little more ominously, what a hostage starts to feel toward your captor: out of utter dependency comes a sense of complete relief. Another star on the Gen Surg team was Karen. The team arrived quickly and left quickly, checking in on all patients being followed by Gen Surg before their 6.30 meetings. It was a healthy start to the day being contacted by such an on the ball department, unfortunately not all Depts are the same in that regard.

So one of the reliefs of coming up from CCU to 4 and 6 was that we could sleep on a bunk beside Sasha. Or as Sasha preferred, in her bed with her. She would wake, turn her little head and if she didnt see one of us, she would shout out until the situation was rectified.

Some of the nurses were so quiet, they could screw in the TPN caps or take blood without waking Sasha up. Sometimes they didnt even wake me up. The quietest nurse was Janelle and so behind her back she was The Mouse. Sleep is like gold. It hurt us in a way to see Sasha sleeping through IVs beeping, the foghorn of the patience call button for the nurses, emergency calls on the general intercom etc.

So as we treasured our snatches of sleep, we treasured the nurses and doctors that respected the sign that said Sasha is sleeping, please come back. We treasured those with softer voices who were light on their feet as I could awake at even the rustle of a paper.

And seeing Riley at our house just reminded us how far our brave little girl has come and how long and hard she has fought. Still we take it Day by day.