A friend of mine asked me recently for a quick summary of what my son has been through. He wanted to know a little backstory on our life with him and before him and his diagnosis and prognosis and all that. I sat down and ran through the list. Then I ended up writing something I should have written a long time ago.
Jess and I met at her brother John’s wedding in June of 1999. I was with the other groomsmen, setting up chairs. The door to the sanctuary blew open and I saw my future wife standing outside in the parking lot. Not thinking, I quickly slammed the door, turned to her brother, and yelled, “There’s a beautiful girl outside!” All the groomsmen ran to look. Then John sighed deeply and said, “That’s my sister.”
I spent the rest of the day trying to get her attention. I stuck grapes in my cheeks and acted like a monkey. You know, stuff like that is tough to resist. When that didn’t work, I wrote my number on a piece of paper tablecloth, ripped it off, and gave it to her mother.
My job was lighting the floating candles on the banquet tables. I would pick one up and touch the flame to the wick, and drop the candle in the jar of water, and Jess followed behind me, lighting the floating candles again. She’s been cleaning up my messes ever since.
After five years and two healthy daughters, life was looking pretty rosy. We decided to go for one more child, and might have had more if Fin hadn’t been such a surprise. And boy, what a surprise. His birth was difficult, he was huge, and after a lot of pushing, Jess had an emergency c-section. I was allowed to peer over the curtain and see my only son. I cut the umbilical cord. Then they took him to the NICU and we went back to our room and had supper, all smiles.
In the middle of our dinner of hospital pork chops, a doctor came to visit and said our son was not breathing so well. He said they gave him oxygen and C-PAP, and we’d hope for the best. We put down our forks. He was just born an hour ago, and now we were hoping for the best? What did that mean?
The next week was not easy. He got worse. He was put on a ventilator. He ended up on an oscillator. There was a feeding tube down his nose. They shaved part of his head and put in an IV. We got to hold him every now and then, but there were all these tubes. We smiled and put on our bravest faces. Then there was the family meeting. After a month of trying to wean him from the ventilator, he was not tolerating it, and the doctors were out of ideas. We were sent to Portland and a new team of doctors would weigh in with their opinions.
They immediately had things they wanted to try, and he had surgery to close a vessel between his heart and lungs. It worked, and the next day, he was looking like a different kid. Then he coughed just right and the device they put in place popped out. They had to do the procedure all over again. We spent the first surgery nervously tapping our feet and learning how to play Sudoku. We spent the second surgery in the bar.
For five weeks, we stayed with my in-laws in Portland. For five weeks, I was out of work. They made me sign FMLA paperwork and saved my job. Fin got better and better. He was weaned off oxygen successfully and prepped to go home. The day before we were scheduled to return to Bangor, we stopped in his room to see him back on oxygen. We asked what was happening. The nurse said she had a theory; he didn’t need the oxygen, he needed the flow. She couldn’t explain it. But as it turned out, she was absolutely right.
However, pursuing that thought was put on hold. On New Year’s Day in 2010, Fin woke up screaming. My son hadn’t made much of a sound up until that point. Months of being intubated had left him with very little voice. But that morning, his cry was loud and clear. We picked him up and found a diaper full of blood. We rushed him to the hospital and he stayed there for a long time. They diagnosed him with ulcerative colitis, but he also had RSV. He was put back on a ventilator. Then back on an oscillator. We were right back to the day he was born.
Slowly, his systems started shutting down. His lungs, his heart, his kidneys were all affected. RSV was ravaging his already sick body. Then the doctors found that air was trapped in his abdomen, and it was not supposed to be there. They rushed him to the OR for emergency exploratory surgery. He had a perforated bowel and the equivalent of a bowel movement in his abdominal cavity. The doctors told us they could take out his entire small intestine and leave him a short gut kid, or we could sew him back up and let him go peacefully. We were all for the latter. But our pastor and pediatrician were in the room, and I could not make that decision with a good conscience. I said if there was a chance, we had to take it.
I didn’t have to make a choice. Half an hour later, the doctor came out and told us that the pieces of intestine he’d given up on completely had turned pink again. He only had to take the bad stuff, and then give him an ileostomy, and Fin would be okay. After calling everyone in the family and telling them Fin wouldn’t make it through the night, we called back and told everyone about the miracle. Fin would pull through.
And he did. He got better and better. We took him home and fed him intravenously and changed his sterile dressings in our kitchen. He got bigger and stronger. Eventually, he was able to lose the bag that collected poop right above his belly button. His colon was reconnected. Things were looking up. Until he got sick again. We noticed that although he was sleeping and his chest would rise and fall, he was not moving air. After a few nights of this, he turned blue, and stopped breathing. We rushed him to the hospital again. And again, they told us, they had to start over. We were back to square one.
Finally, at eleven months of age, they discovered something. His airway, which they knew was floppy from looking down on it from the top, was scoped with a camera and a light. They found that it was completely flat. In fact, it was nearly nonexistent. How the kid was able to breathe at all was impossible to tell. But he had done it. He’d done it for a year. The roomful of doctors saw pictures of his airway on the screen and all gasped. We were sent back to our room with a diagnosis of severe tracheobronchomalacia. His airway was floppy and weak all the way down into his lungs. Everyone who had taken care of Fin apologized up and down. They didn’t know how they missed it. We said it was okay; survival had been number one. But, we asked, what next?
No one knew. We found ourselves in Boston. The doctors there determined that Fin should have a tracheostomy. For five weeks, Jess stayed with him in the hospital, and I traveled back and forth with the girls. For five weeks, Fin was unconscious on drugs, a hole in his stomach so he could eat, and a hole in his throat so he could breathe.
And he has thrived. He’s grown. He’s found his voice, and then some. He’s gone on road trips with us, charming people everywhere. He’s been to Disney World twice. And he’s been through Pre-K and kindergarten. He’s gotten sick a few times, but nothing too scary. He sees a specialist for every major system and they make adjustments as necessary. When we think back on what he’s been through, it seems like an unfair lifetime of problems for one little boy, but he’s managed to survive. I think back on that nurse who told us he didn’t need oxygen, he needed flow. She was right. The vent gives him the flow and the pressure to keep his airway open. Her name was Posey, and I think of her every time I look at Fin’s trach ties, which are made by a company called Posey, and it says so right on the back of his neck. They told us that with tracheobroncomalacia, the first year would be the hardest. Boy, were they right.