The First Surgery

Once Dylan was home, we began taking him on a whole series of doctors follow up visits.

Among many of the unknowns that we had with Dylan's medical condition was his hearing. We did not know if he could hear and if he could, we did not know how much he could hear. Dylan's pediatrician recommended that we see a Pediatric Otolaryngologist (otherwise known as an Ear Nose Throat Doctor or an ENT). He thought that there might be water behind the ear.

We looked for an ENT and Staten Island University Hospital recommended Dr. Robin Dyleski , who worked at New York Eye and Ear Hospital. I was shocked to discover that there were only a few Pediatric ENT's in the entire city of New York.

For a normal person fluid behind the ear drum drains into your sinuses. When the doctor examined Dylan she found that the fluid was not draining. She recommended some drops and a return visit in a few weeks to see if it would get better.

Upon our follow up visit, she determined that the fluid was stuck there and it was putting pressure on his eardrums and affecting his hearing. There was no other option but to operate on him and insert an ear tube in each ear. Ear tubes are tiny steel tubes that puncture the ear drum and allow the fluid behind them to drain. The hope was that his hearing might be normal after the ear tubes would be implanted. The only negative to the ear tubes is that they usually only last about a year and they need to be replaced over and over again.

I was made aware that this was a very minor surgery and that we should have no real concerns, but the father in me was in full panic mode. He was so medically fragile. What if something went wrong? What if he had a bad reaction to the anesthesia? The one good thing that was going to come of it was that Dr. Dyleski would also remove some of the ear tags that were so visible.

I was a nervous ball during the day of the surgery. Thankfully, it went very quickly. Dylan was great. He woke up so nicely from the anesthesia. His outer ears looked so much better. Unless you looked carefully, they looked nearly normal. Before there was no question that his ears were deformed.

Dylan had to stay in the hospital overnight for observation to make sure there were no negative side effects from the surgery or anesthesia.

The one thing you learn is that it is both a blessing and a curse to be unique at a hospital. It is a blessing because many more doctors are interested in your case and will pay attention to you and look in on you. When you have a common disease or affliction, the doctors barely notice you. They have a been there, done that attitude for the common stuff.

The curse comes from the fact that every nitwit intern and resident wants to come by and look at the "medical freak". They are not there to help you or assist you. They are simply there out of morbid curiosity. In the one day we were in the hospital at least a dozen different interns and residents came by to look at Dylan. The worst are the know it all interns and residents. They act like they are so superior and smart where in most cases they don't know anything at all.

One resident came to take a look at Dylan and asked what he had. We told him that Dylan had Emmanuel Syndrome. He tells us right away that he knows what it is and he has treated other Emanuel Syndrome patients. Right away we start quizzing him all about this. He starts hemming and hawing and is unable to answer any of our questions about this alleged past patients or even about his knowledge of Emanuel Syndrome. We had caught him in his lie. He had no idea what Emanuel Syndrome is. We knew for a fact that Dylan was the only Emanuel Syndrome child in the tri-state area.

A good experienced doctor will simply admit his ignorance and study up on the issue. We have run into several great doctors who have become semi-experts in Emanuel Syndrome after seeing Dylan. None of them lied and pretended they had all the answers upon meeting us.

Of course this particular resident couldn't simply do the right thing and admit he lied to us earlier. Instead he actually pretended that his pager went off and ran out of the room. My wife and I were incensed by this. We demanded to speak to the attending physician. We told the attending how unprofessional and dishonest that resident had been and we told him we did not want any other interns or residents coming within 50 feet of us.

The following morning Dr. Dyleski came by to take a look at Dylan. The tubes had done their job and drained his ears. Now it was only a matter of finding out if his hearing worked...