How Phineas

It seems like so much happens but there's so little I can report. As my parents say, things change from phone call to phone call. And it's true, it's been a real roller coaster. The major ups and downs lately have had to do with Fin's diagnosis and how to treat him. The doctors in Bangor determined that Fin has tracheobronchomalacia. They performed a bronchoscopy with a flexible scope and it showed pretty serious airway floppiness as well as weak bronchial openings. Basically, unless Fin's own work of breathing keeps his airway open, he has obstructive apnea. This is not a great scenario, obviously, but it is treatable and there are things that can be done to help. But first, the Bangor team wanted the Boston specialists to take a look at him.

So Fin was flown to Boston, where an ENT specialist, a pulmonary specialist, and a cardiologist took a look at him. And while the opinions varied day to day, and his overall condition apparently improved dramatically all by itself, they all agreed that the tracheobronchomalacia appeared to be a major part of his health problems. The question was what to do about it. The best treatment, C-PAP (positive pressure into the airway) is the usual route, but Phineas does not tolerate C-PAP. He always opens his mouth and lets the air out, so it doesn't help ventilate him. Everyone agreed that the thing to do was to bypass the problem, and that meant a tracheostomy.

However, no one could tell us definitively that a trach needed to be done. It could help, but as they kept looking at Fin and going over his numbers, everything just looked so good.... not like a kid that needed a trach. It always came back on me and Jess to decide, and that was a tough call to make. We couldn't see putting a hole in his throat if it wasn't going to fix the overall problem, even if it helped out somewhat in the long run. Besides, as he improved, it looked less and less likely that he needed a trach. He had a few oxygen desaturations overnight on a couple different occasions, but nothing to write home about. It began to look like we might get the specialists two cents and then a trip back home.

Then Fin began to act up. Coughing. A slight temp. Quick desaturations. He was up to his same old tricks. In a way, we were slightly relieved, because it became clear that we didn't end up in Boston for nothing, and they got to see what we have been dealing with for months. Then his blood CO2 began to rise, and the doctors suggested C-PAP. Jess shook her head. She said mark her words; he'd be intubated before the night was over. And she was right. He couldn't clear his secretions or keep his O2 saturation up, and C-PAP didn't help, so they put him on the ventilator at about 1 am.

All this made up everyone's mind. Fin needs a tracheostomy. It will help stent open his airway temporarily and allow for easier ventilation instead of constantly needing a breathing tube. It will allow him to grow and sleep better and keep the CO2 out of his bloodstream. It will feel like a setback, but hopefully, it will allow him to get better long-term. Unfortunately, we have to wait until he's over this respiratory infection that he came down with while we waited to decide (how Phineas) before they can do the tracheostomy. Maybe we waited too long. Maybe all the watching and mulling over the options allowed him to get sick again. Maybe he would have gotten sick anyway. This is his pattern. It feels like a kick in the pants, but it's how Phineas is. As one of our nurse friends said, he'll get there. He just likes to take the long way.

And finally, on June 24th, he had the surgery. He already looks better. For one thing, you can see his whole adorable little face. Go Fin!