The Big (Scary) Day

For no good reason, I’m reminded of a “If you’re happy and you know it…” book we read with Amelia. The final pages had a picture of a shadow puppet on the wall that looked like a monster. The lines we sang were, “If you’re slimy and scaly and mean…oh never mind”. This day felt a little like that. It was definitely slimy, and scaly, and mean. There was no doubt that we wished we could just say, “never mind”, and stay home. As you now know though, our little boy was in a potentially life threatening condition. The only choice was to show up at the hospital that morning, the day after my 33rd birthday, and hand our son to some strangers to be wheeled off to who knows where so that they could open up his head and fix him.

So, of course, we showed up. At right around 6am we made our way to the surgical waiting room in the hospital. It was surprisingly full. It was also one of the most depressing places I’ve ever been. It wasn’t so much a waiting room, as a waiting hallway. A line of chairs running down an ugly, off-white hall filled with people and their loved ones waiting to be operated on. It was also, well, smelly. You wouldn’t believe me if I tried to describe the smell of body odor that permeated the entire area. I could only keep thinking, “Don’t they ever clean here?”.

“Luckily”, since Declan is an infant, we didn’t have to wait too long. Infants and toddlers always get first dibs on surgery. We were able to go back with him after just a few minutes. What would follow was a cavalcade of friendly, but definitely busy, people who would all be in some way involved in the upcoming surgery. They all had a smile, and a speech about their part in the operation. A few of them also asked us to sign some forms, many of which were our affirming that we’d been told that there was a possibility of a number of things going wrong, including the possibility that this may be the last time…honestly, I can’t even bring myself to type it, but you know what they told us might happen.

It was probably the hardest moment of our lives. Declan, even though it had been a long time since he’d eaten, had managed to fall asleep while I rocked him on the tiny love seat that was in the room. So, quietly I laid him down in the crib surrounded with blue metal bars, and quietly he was wheeled away from us. We walked along behind him for a moment, but at a certain point we had to turn right, and he kept going straight down the hallway.

We went back out to the smelly waiting room, and decided it wouldn’t be possible for us to sit there. Instead we made our way down to the cafeteria. We found a table and ate the steak and egg sandwiches we had brought along with us since we were too rushed to eat before we left. We waited. We pretended to be OK. We fiddled around on the internet, tweeting and updating Facebook to let people know what was going on. We waited. Finally, the restaurant-like pager they gave us went off.

We walked quickly to the elevators, both trying to keep from looking like we were about to break into a run. We went to the receptionist desk. She told us that the Neurosurgeon had come out looking for us, and that she’d call back to let them know we were there. Form behind reception’s plexiglass enclosure they pointed to a phone on our side which then rang. Kayleigh picked it up, said OK a few times, then hung up. They told her that everything went well. Declan was awake and in “recovery”. They’d contact us again when we’d be able to see him.

This time we found a seat in the horrible waiting room and sat on our hands for a while. The Neurosurgeon came out after a short time and told us that everything went well. He told us a little about the stitches, and reiterated that Declan would need an MRI next so that he could confirm that it was in fact Aqueductal Stenosis that had caused his Hydrocephalus.

We waited a little while longer, and our pager started vibrating again. We approached the receptionist again, and she pointed to the phone again. This time they gave Kayleigh directions to the Pediatric Acute Care Unit, gave us a room number, and said Declan would probably be there waiting for us when we go there.

Our little boy survived his operation. We were going to be seeing him again soon. We left as fast as we could, still trying to look like we weren’t in the biggest hurry of our lives, which we of course were.

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About Roland B

A dad learning to live.

Posted on May 28, 2011, in Declan's Diagnosis and tagged , , . Bookmark the permalink. 6 Comments.

  1. Wow. I read every word of your blog and I’m just speechless. I knew his condition was potentially serious, but I had no idea the high failure percentage for the shunt.

    Roland and Kayleigh…I’ve said it multiple times, but I mean it from the very bottom of my heart. You’re in my constant thoughts and prayers. You’re boy *is* perfect; don’t ever let yourselves be convinced otherwise. He has a medical condition that, if not treatable, certainly can be managed. He’s beautiful and yes…he probably does have a lot on that little mind of his.

    I love you both and am here for you if you just need a sounding board. Squeeze that beautiful baby tight for his great Aunt Cathie and let him know that he’s loved from miles and miles away. And, while you’re at it, don’t forget beautiful Amelia. She needs an extra squeeze or two through you from me.

    Love to you all. Cathie

    • “Failure”, while it is pretty terrifying, isn’t quite as horrible as it sounds. What it means is that we have to basically watch him constantly for signs that the shunt is failing. If it does fail, as long as we are able to catch it quickly there shouldn’t t be any lasting damage, but it will almost certainly mean more surgery.

      Thank you for the kind words and support.

  2. Yo Sister Foo

    (((hugs)))

    I can’t imagine. I wish I had been there.

    I love you guys.

  3. I just wanted to comment with a success story.

    My boyfriend was born at 24 weeks. He had hydrocephalus and required open heart surgery. He had a shunt put in place and it is still in place, and looking at him, you’d never know the struggle he went through.

    His mother was told he’d never be able to play contact sports, but he is now a full-time college student who wrestles for his school and has played contact sports in high school, also.

    Declan and your family have been in my prayers and will continue to be.

    Blessings,
    Steph

    • Kayleigh Brodeur

      Steph! Thank you so much for your prayers and your comment. We are glad to hear your boyfriend is doing so well and accomplishing things they never thought he would do. You have given us hope and that is no small thing.

  4. Thanks for sharing that and we appreciate the prayers.

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