Tuesday, March 26, 2013


I think we were halfway through the post-surgical slide presentation when I noticed that it had started snowing.

It had been a long morning already in Toronto. We had woken up very early, gotten ready, bundled up all the kids--against what was very much winter here--and hit the highway by six. Traffic had not been bad for a change, which should tell you what leaving 10 minutes earlier can do for travel times in the T-Dot. We were on time, arriving at the hospital early for Wyatt's pre-op day. He had a flurry of tests in succession followed by a lengthy assessment. We had met with the intake nurse, the anesthesiologist, the CVS, the booker and two researchers. My husband was asking a question and I made the mistake of of looking out the window.


It fell in big, lazy flakes that took their time and appeared to not be in any kind of hurry to cover the gravel roof on which they fell.  Officially it was the first day of Spring, but here this was, trying it's casual best to remove any hope of warmth.  It obscured my vision and drowned out the voices in the room.  Instead of facts and images and the general din that is usually there, my mind was instead filled with a giant absence.

A silence.

Our stress levels had skyrocketed when, the day before, the surgery date had been changed. After several calls attempting to convince us to move the date, we were informed that the surgeon was no longer available April 3rd. I was more than a little upset; I had already moved around all the vacation time I had to make sure I was off for his hospital stay (and thereby not missing any income as well). Daycare, after care, meals, laundry, shopping, going to school... the planning of ALL THE THINGS had to be adjusted as well. His surgery date is now April 10th, one week later.  One week makes a world of difference to you when you do tours that are not based on a standard 7 day rotation.  Luckily, I work for very accommodating people. When I took that call however, I wasn't sure how feasible moving everything around would be.

Four a.m. comes very early when you stay up to midnight. It was still very dark and cold when we got Wyatt dressed and my other two bundled up, still in their jammies, to have a fun day at a friends house. We rolled into the lab just before 7:15 and Wyatt got to half-watch an episode of Max and Ruby on the TV until we were called in. I'll spare you the details, but let's just say that taking blood, a lot of blood, from a two year old is pretty much torture in their eyes. You can't explain things like CBCs, cross, types and matches to little ones. You just hope that you voice doesn't crack as you sing "Twinkle Twinkle Little Star" (and all it's permutations) quietly in his ear. You hope that the tears stay in where they belong as you hear him cry in X ray, as they put him in a device to keep him from moving--with his arms over his head--while overhearing the tech tell your husband "Well, he'd better get used to it! He's gonna have a LOT of these".

His ECG seemed to go a little more smoothly, at least at first.  Those stickers were sort of cold and all his attempts to grab at the fun strings were denied.  Eventually however, the indignities he had already endured that morning plus this new frustration made it impossible for him not to cry again. Our quiet singsong seemed to calm things a bit--as did playing with the nurse's name tag--and it was over in a few moments.

We were only in the waiting room a little while before our intake nurse came in and introduced herself. The assessment part was thorough and asked many questions regarding his overall health. She told us what the rest of the day would look like, who we would meet and what each member of our upcoming parade of experts would have to offer us. I was particularly interested in meeting with the researchers to see what studies they hoped to convince us to be in.

The first researcher was lovely and we chatted long after the interview was over. She was collecting data on hospital experiences, which included not only staff-patient (or parent) interactions, but also on the surgery itself, any outcomes, difficulties, side effects and the like. If involved, we would be in contact with her almost every day of Wyatt's hospital stay and after discharge until his post-surgical follow up appointment. It sounded a lot of fun to Sean, once he heard that we would be in the group that got to play with an Ipad for a week or so. For me it seemed to be a valuable way to communicate some of the difficulties I'd been having with organization and the like regarding Wyatt's surgery. Once she was done, our original nurse came back and suggested we go for a break for half an hour until the anesthesiologist was available to come talk to us. We welcomed the opportunity for a little break as Wyatt had gotten a little fussy and we trundled off in search of coffee.

The Atrium at Sick Kids Hospital is a wonderland of elevators, fountains and random whimsical statuary. We scored a table next to some eerie leaping bronze children and sat down to collect our thoughts. Wyatt noshed on a little banana bread and was content to take everything in, while Sean and I talked over what we had learned so far. Eager to get our day over with, we went back upstairs exactly 30 minutes later and parked ourselves in the waiting room. I must have nodded off as I sat there and I was jolted abruptly by Wyatt's name being called. I quickly gathered our things and we wheeled off to another room to meet the anesthesiologist.

Wyatt too had fallen asleep so his snoring was pretty obvious when the anesthesiologist arrived. We chatted about this and other issues; I was very relieved to find out that he would be given some gas and be asleep prior to any IV lines going in. He was a kindly man and although he wouldn't necessarily be our anesthesiologist, whoever was going to be would meet us the day of the surgery. He explained that Wyatt may or may not have his breathing tube or be on the ventilator when he returned from surgery to the CCU; it would depend on how he did afterwards.

The next researcher was from the Heart Centre Biobank Registry.  This Registry collects and stores samples (such as saliva, blood, skin and other tissues) from people with either congenital or acquired heart disease.  A related history is also obtained and related to the samples; these are used to research biological (including genetic/genomic) and environmental causes of heart disease. Tissue samples from the incision site, plus about 5 mm of blood would be donated and help in research. It was fascinating to listen to and I was really enjoying the information presented, when I felt my hands go cold. I rubbed them absentmindedly, trying to warm them up as she finished her talk and left the papers for us to sign.

The CVS (Cardiovascular Specialist) was next. He explained the length and breadth of the surgery. Again, it was riveting stuff, including how they would create two separate valves out of the one shared one and suture the clefts that were left. My hands had gone cold again. I listened to him talk about the heart/lung machine, the necessary transfusions, the apparatus involved, the incisions and the complications while keeping one eye attuned to my husband's every nuance of expression to assess his understanding of the situation. I had been fiddling with a pen and continued to do so as we listened to the complications of the surgery: infection, brain damage, organ failure...


My head was nodding in understanding but my stomach was uneasy. He presented scenario after scenario: there was even an instance where, if his heart had too much swelling, they would leave the incision open (but sealed with dressings) to allow for the needed room. Once the swelling had gone down, they would then close the incision. We signed the permission forms. Wyatt was still peacefully asleep in the stroller and we sat, in silence. I brushed the hair from his forehead noticing a slight tremor in my hand.

Our nurse returned to present a slide show about what to expect when Wyatt returned from surgery. She showed images of the (at least) two tubes that would be installed to drain any fluid from his chest cavity.  There were two internal pacing wires that would be connected to his heart in the event of heart block. There would be a central line (CVA), a femoral line, peripheral IVs, each providing a different function.  There was also the incision itself. From a nursing perspective, this was great information and a bit of a review. My hands however, had started to shake harder.  Sean asked something about visitors...


My head was a little swimmy and my eyelids were threatening to close.


I had reached saturation.

Wyatt slumbered on, oblivious to this, only occasionally sighing and shifting in his seat. He woke up near the end of the presentation and looked around to say "Crap, are we still here?". Our nurse disappeared for a few minutes and returned in the middle of Wyatt's diaper change to tell us that the surgeon would not be available until 3 o'clock as he was in surgery. She suggested that we get some lunch and explore for a bit and she would call me about that time. We had two hours to kill.

We went back downstairs and scored ourselves some lunch. We chatted, checked our phones and generally talked about anything other than what had just transpired. We explored the gift shop and eventually made our way back upstairs. I was hoping that the big TV in the waiting room would at least keep our wee boy occupied... and maybe, just maybe, I could close my eyes for a moment again.

It was 3:15 when our nurse came back to tell us two things. One the RSV nurse wanted to talk to us (re: RSV vaccination status) and two, the surgeon was not going to be available until after 6.

We were unable to wait any more.   I scrambled to find a few alternative dates that we could come down and meet the surgeon if he had additional information to give us. Other than possibly making a personal connection with him (as part of the process), I personally felt that it wasn't necessary to meet with him other than on the day of the surgery. Sean asked if there was a way that the surgeon could call us. We made arrangements, I left some dates for the booker, including April 3rd (as we are very much free that day). We were tired, overwhelmed, concerned for our now restless son and generally unhappy, a sentiment that was only compounded when the RSV nurse asked us if our son really had Down syndrome as "...he doesn't look like it. He must have a mild case. You're doing such a great job!" We were too far gone, too exhausted to correct her at that point. We just smiled and nodded like a couple of jerks and got the hell out of there as soon as she was finished her spiel.

Sean was noticeably rattled as he stomped through the freezing street on the way to the van.  I stumbled along behind him, pushing our enormous stroller and trying not to run people over as I squinted against snowflakes both real and figurative.  He was angry that the day had been so long and that the surgeon could not meet us. I understood why the surgeon wasn't there; he was across the street preforming magic on a little person that desperately needed it. I was comfortable with that, as was he once we had a chance to discuss it.  Still, it had been a very long and stressful day. 

We talked about all that had transpired on the trip home. Other than the one X ray tech and a "well meaning" (gah!) RSV nurse, we had absolutely nothing to say but good things about the clinical staff and the researchers. Where the whole experience fell down was the planning and organization. We are in that study however, so you can bet that we will be supplying quite a lot of data about both our surgical and in-hospital 'experiences'. We drifted through the rush hour traffic until Sean absentmindedly got off on the wrong exit and we ended up taking the scenic route home. Upon arrival, we were much calmer, although completely spent. My hands had even stopped shaking. I released Wyatt to have some play time and we sat down for a quiet moment before Sean went out again to collect our other two children.  The snow had stopped for a while and the sun was doing it's best to warm what was left of the day.  It felt good on my face.  I closed my eyes and breathed deeply.

It's a tricky thing, this weather.

“the snow doesn't give a soft white damn whom it touches.”


  1. First. You know where you have us.

    Two. Love trhe studies. There's a real way of making a difference. We're still in three studies and I'm part of Seattle Children's whatever Sandbox weirdness that's supposed to translate into something much better for patients in the future.


    And love. So much love. A's looking forward to seeing her future self-advocate partner in crime on the other side. She just told me so while she wss busy eating a whole box of kleenex and something that might or might not have been a very sad dried mulberry.


  2. And she was totally not eating the mulberry off the floor.

  3. As I read your blog, it just brought back memories of our experience with Chloe and it was nothing different to what the two of you went through. Same feelings of anxiety, fear, frustration. Especially the part about taking blood. Whether they are two years old or 6 months old, it is painful to see your child give blood, I just remember when they had to take it a second time because, the first set started to clot. I asked the nurse if I could hold Chloe so that she could see my face to make it easier on her.

    I know your pain and frustration all too well. It can be so overwhelming.

    Hugs and support to you.


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