I have a bit of news that I need to share. Jen and I brought our seven-month-old Griffin in on Friday for a procedure to look into his throat. He has had croup and has suffered a lingering lack of breath the last few weeks.
They discovered that he has congenital subglottic stenosis— essentially, he is rapidly outgrowing his windpipe. They are recommending surgery and suggesting we do it soon, as his windpipe is the size of a preemie, which may result in an emergency airway restriction. So we need to avoid that, and hope to avoid a tracheotomy.
From what we understand so far, they will take tissue from his ribcage and reconstruct a larger airway for him. Then, he’ll need to be sedated for five days and stay in the ICU. Then he will need up to two to three weeks for recovery, as he rebuilds strength and muscle after being under anaesthesia for so long. So we’re expecting to be in the hospital for most of November.
We’re letting this news sink in and also feeling grateful that we live in a time and a place where this is “fixable” and he can go on to lead a normal life. We have a lot to be grateful for, and we’re hopeful.
We do not yet know when they need to perform the surgery, but will be talking with the surgeon on Monday. He suggested “sooner rather than later.” The surgery will be done at Children’s Hospital, and we feel we’re in the best medical hands we can be. They have performed this surgery over 500 times, we’re told, and in Griffin’s case, success rate is high.
Thanks for any good thoughts you can give us. I will report in as we know more.