We get asked this question a lot. That’s not so unusual; most parents get asked about their children. But we get asked about Will more than most, I suspect. Probably because Will was born with EA/TEF. Which means it’s been a busy couple of years.
So how is Will?
Well, he’s funny. Feisty. Loud, particularly when he doesn’t get what he wants. He scales furniture, jumps on beds, throws toy cars into dishwashers and screams when his sister won’t let him in her room. So pretty much your typical almost 2-year-old right?
Yes. And no.
When we first learned that Will might have TEF before he was born, we did all the research. And it looked like it was something that could be fixed. If you’re going to have a medical problem, it’s obviously better to have one that can be solved. So we would fix it and everything would be normal and we would move on with our lives.
Only after living with TEF for almost two years now, I have to say I’m not sure it is ever really truly “fixed.” True, we are fortunate that Will’s gap has held and he does not need a feeding tube. And he can eat most things, provided we chop it up well and convince him to drink as he eats. But there have been challenges.
This September, Will grabbed a piece of take-out food from his sister’s plate and ate it. Only it was not as diced-up as his food normally is and it got stuck. How stuck? Well, normally if he’s got a stuckie, we can usually convince him to take a sip of ginger ale, which tends to bring up the food. Or he brings it up himself by sticking his fingers down into his throat. This time, neither was working. He couldn’t even hold down any liquid. Time to call the surgeon.
Luckily, our surgeon was able to arrange for Will to come in on a Sunday to get the impacted food out and do a dilation of his esophagus at the same time. Not so luckily, he had a bad reaction to the anesthesia and wound up in the hospital for days, lethargic and sore, barely holding his head up. It took a while but he pulled through it and our feisty, crazy boy was back.
And then in December, he got what we assumed was a cold. However, anyone who has a TEF kid knows that colds are not to be underestimated. We spent a night with our hands on his chest, monitoring his respiratory rate, on the phone with doctors through the wee hours debating whether or not to take him to the emergency room. The next day, he seemed like he was getting better. And then he got worse. So we took him into the city to a better hospital (instead of going to the one five blocks away) so his pulmonolgist would be able to monitor him.
Will was diagnosed with paraflu, a strain of influenza not covered (of course) by his flu shot. He was on oxygen for a couple of days but luckily healed quickly. We had lovely nurses who did everything to make us feel comfortable but Will hated them all, giving them dirty looks and saying “bye bye” as soon as they entered the room.
So now it’s January, just at the start of cold and flu season (with everyone predicting it is going to be a bad one) trying to do everything in our power to keep the boy healthy. He gets Pulmicort twice a day as a precautionary measure and Atrovent when he’s coughing—which honestly he will do probably until May. Which means we’ll be getting dirty looks whenever we bring him out in public for months to come. I swear I should wear a shirt that says “No, he does not have whooping cough or croup or pneumonia. It’s his trachea, people. Honest.”
In the meantime, we wash our hands until they are raw, minimize our time in crowded places and refuse to let Will hang out in any more doctor waiting rooms (since we are convinced he picked up paraflu at the pediatrician’s office). Of course, Will isn’t exactly helping with our efforts since he finds it funny to lick things he shouldn’t. Like radiators. Walls. Windows. Garbage cans.
At least we know if he’s running around licking walls that he is probably feeling healthy. And we know that overall, given his condition, it could be a whole lot worse. There are people out there dealing with much more difficult health situations than we are so I don’t feel sorry for us. And I hope nobody else does either.
But this January 21st, when our wild boy turns two, we will toast him with something stronger than a juicebox. Because we’ve earned every single one of his 730 days on the planet. But then again, most things worth having in life take work. And Will is most certainly work—and absolutely worth it.
Happy 2nd birthday, big guy.