Talking about surgery

I have been told by other parents, that I should blog about our struggles with Noah's health issues because other people with chronically ill children may benefit. With that in mind I thought I would blog about a big issue: how to tell your child that he has to have surgery - for Noah, one that he can't live without. At Sick Kids we are blessed with Child Life Specialists who talk to kids about surgeries and are absolutely amazing. However, until our pre-op clinic, we have to handle it ourselves.

When we went to cardiac clinic two weeks ago, we told Noah we had to do some tests on his heart. He thought they were fixing his heart, and told us so. We didn't agree or disagree but he seemed ok with it.

On our own, Keith and I both started talking to Noah about the surgery. We aren't trying to dwell on it too much or he will be more afraid of it arriving, but we do want him to be aware of it. A few nights ago, when Noah was telling me how he took a train, subway and bus to the hospital two weeks ago, I told him we would be going back soon for the doctors to fix his heart. He was ok with this and sort of brushed the thought aside and kept telling me about his train trip.

Last night, while Keith was putting Noah to bed, he also brought it up by telling him he would have to go to the hospital soon to get his heart fixed. In a completely gut wrenching moment, Noah told Keith he was scared. Keith answered him in the best way possible by agreeing that it was scary, and that mommy or daddy would be there with him at all times. It is absolutely important that we don't lie to Noah by telling him it isn't scary or that it won't hurt. We both refuse to do this - it will just serve to make Noah loose trust in us. As a nurse you are taught to be honest, but that doesn't mean you can't add a bit of hope in there: "Yes, this will hurt, but I will hold your hand and when it is done we can pick out a toy out of the treasure chest" (A box of trinket toys for kids around Noah's age who are afraid of procedures that will hurt).

So at dinner last night Keith was telling me, for Noah's sake, that they had spoke of going to the hospital soon. Noah instantly got a scared look on his face. I just reiterated that we will always be there for him - either Daddy or Mommy. But that we also have to look after Layla, so we will take turns staying with him.

I am trying to not dwell on it too much - so as not to make him fear the event. But I also don't want him walking into the hospital in a month's time, thinking we are just going for normal tests again. I am not too keen on telling him they will be cutting him open to get to his heart - so I am leaving that for the Child Life Specialist, who uses a muppet-type of doll to explain this. Anyone who has had a child go through surgery at this age knows how tricky it can be. I do, however, thank the heaven's that we were able to hold off until he was 3 years old because at 2 years old he would have been hard to reason with and speak to so this makes it somewhat easier.

He is doing ok otherwise though. We went for a long bike ride and he pedaled most of the way - he got tired near the end but after a short break he was excited to go again. He isn't eating much lately, which I suppose is to be expected - with heart conditions, when the heart doesn't work optimally, one of the first places to take notice of heart failure is the stomach (think of the fight or flight response - same deal). He is still laying around a fair bit but he doesn't look ill to me. I am thankful we are going to repair his heart, because having a surgery hanging over our heads for the past two years has been very hard and we have hope that he will feel and act much better after the surgery, even though his heart still won't be 100%.

So that is our current struggle surrounding the heart condition. It consumes a lot of our brain power and emotions but we still carry on our day-to-day living, which at times can seem odd given what we face in a month's time.