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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.

Lots to Learn

If you think about it, it isn’t often in life that you face a situation where you have no idea what you’re up against. Even when these situations do present themselves there is usually a time of preparation. A time when you can do a little research, make a few mental plans, and just get used to the idea that something new is on the horizon. Not this time.

When Kayleigh took Declan in for his well baby visit we just expected that by the end of the day we’d know how fat our little boy had gotten, and how much “taller” he was. We had no idea that in a few days the ultrasound we’d take him to purely as a precaution would result in his being diagnosed with a condition that will likely be with him for the rest of his life. We left the Neurosurgeon’s office armed with a pamphlet from the Hydrocephalus Association, their website address, the knowledge that he’d be having surgery in a few days, and little else.

There were so many new terms thrown at us Hydrocephalus, Aqueductal Stenosis, Shunt, Endoscopic Third Ventriculostomy. There were so many stories out here on the internet to read. There was also still a job to go to, 2 children to bathe and feed, and plenty of dirty diapers to change. It was clear we had a lot to learn. We did spend some time browsing the internet, looking up some of these terms, reading a few (horribly scary) stories, but for the most part we would show up at the hospital on Wednesday, May 25, 2011 with only the vaguest understanding on what was going to happen once they put him in the cage-like crib and wheeled him down the hall. All we really knew was that they were going to be performing brain surgery on our tiny 2 month old little boy.

I can say with an absolute certainty that a large part of our lives will be devoted to learning about, and staying up to date on the condition that has effected our Declan. I am unspeakably thankful that we live in an age where you can copy and paste a term into a search engine and find abundant information on any topic. I can’t imagine what this experience would’ve been like just 20 or 30 years ago. So, even though we were completely blindsided by this, at least we know that we can go to Google at some point and get a push in the right direction.

(A note on the photo: This was taken at about 3 weeks of age.)