Noah's heart

...and so, Noah needs more surgery...and soon.
That is all we know up to this point.

As I tell people this, I do so in a detached manner that seems to alarm the person on the receiving end. I was telling Noah's teacher yesterday who said, "Um...this is a small surgery?". I respond, "No...it is open heart surgery". She looks at me and says cautiously, "...you are handling this....well....". It sort of makes me feel like a horrible parent. Keith is a bit detached too. To him, we knew this was coming so it is just what we expected. To me, I seem to be spitting out the information but  not absorbing it. I talk about it in that detached manner nurses do: "I have a repaired VSD, ASD, Co-arct patient in room 6 here for pre-op workup for a muscle bundle resection and valve repair....". It is slightly demented how I am treating it, to be honest. I am walking around acting as though I didn't receive devastating news yesterday. I think every minute though, my layer of ice is melting and some poor sap will ask how the appointment went and I will finally dissolve into tears of grief.

Don't get me wrong, I did tear up as I BBM'd my brother to tell him what was going on as I stood booking his next appointment in the cardiac clinic. He was (and always is) the first person I tell these things to and he always says just the right thing to make me tear up. He is always very supportive. I didn't want to cry in front of Noah though - he doesn't know what is happening. He knows his heart needs to be fixed by a doctor, and that is it so far.

So the day was ok. I always have minor panic attacks walking into Sick Kids these days. After working there for four years in total, I find that those memories and experiences are completely obliterated and replaced by the memory of the hospital stay with Noah. Truthfully, the incident traumatized me, and likely Keith. But I can't really get past it. So I was a bit anxious all day. We took Noah on the train and subway so that distracted us. He was such a good boy.

When we got there, our appointment was supposed to be at 9am and they told us it actually was at 11am. Noone called to tell us so I got quite upset. They saw us at 9:10. They were great and explained to Noah what would happen and he lay on the table, quietly watching Treehouse tv for nearly an hour and a half. He fell asleep at times and was quite warm (Turns out he also had a fever of 103 degrees - not sure why yet). After the echo he had an ECG where he just lay quietly on the table again, prompting the RN to ask him if he "is always this serious".
We had to eat lunch and pass some time while we waited for our 12:30 appointment with the cardiologist. This wait was the longest because we knew the news would be bad but we just wanted to hear it. We had to see a fellow first, and that was even more torture because she couldn't tell us what was wrong yet. Finally we see our cardiologist and basically all he could tell us was that the muscle that is building up under his aortic valve has gotten so crowded that we can't wait any longer to do the surgery. He couldn't tell us if the valve needs replacing or anything more. We have to wait until his case is presented to the surgeon and cardiologists on Monday. Keith asked some great questions and I felt like I just sat there with a goofy look on my face. Somewhere between a grin and a grimace.

Noah fell asleep on the bus ride home - and then we were settled on the couch (him, slightly febrile still) relaxing and watching tv.

I carried on (as did Keith) normally. Making jokes, playing and having a good time with the kids. After Noah had some Tylenol he was a bundle of energy and we had a great time playing. For yesterday, at least, I refused to let his defect and surgery affect our time together. I refused to sit beside him on the couch quietly crying. I just wanted us to have a normal and fun time. And so, I let him throw foam blocks at me and laugh hysterically, even though we aren't supposed to throw toys at people, because lets face it - the kid needs to be let off on some of the rules now and then.

Sometimes my mind wanders to all that can go wrong. I know all this from working there and this knowledge destroys me. I think of when he will be healing and we have to remove his chest drains or pacing wires and how it will hurt him. I think of him laying in bed, intubated and on a ventilator. It is gut wrenching. I can't get these images out of my mind and that is why I choose to be numb for now. When he was a baby it went so fast and was a life-or-death operation. We didn't have time to dwell on the situation. With a week old baby, you are coping with being a new parent, mom has post-partum healing herself, struggling to figure out how to breastfeed, living on no sleep. We had no choice but to deal and move on. This time, the waiting....it's excruciating...

So, as I type this, the ice melts a bit more and I get a bit more sad. Waiting for Monday and even for our surgical time (which will be before Halloween) is like a huge weight hovering over us. Once we get that date, we can set forward with our plan: who will stay in the hospital, who will stay with layla, who will work, who will watch Jade, etc. We plan for 10 days in hospital and who knows how many more days at home recovering after.

I will update when I know more. :)