A day at the doctor

We spent the day at Children's National Medical Center for a couple appointments.   

The ENT surgeon who did the tracheostomy said he'd give Zachary an "A" for how good his neck looks and how well we've taken care of it.  He said most kids in this situation have their trachs until they are about 2 years old and they no longer need supplemental oxygen.  So that's about another year.  They are quick to say that all kids are different so it could be sooner or could be longer.  Too early to tell right now for sure.

The pulmonologist thinks he's making steady progress as far as his lungs go.  He'd like him to be on the ventilator less and need lower levels of oxygen.  We will be trying to wean both over the next month.  The longer he needs the additional oxygen and pressure support to keep his lungs inflated the longer he's likely going to need breathing assistance.

We were discouraged to hear he only weighs 12 pounds, 14 ounces, just two ounces more than a couple weeks ago.  He needs to grow as much and as fast as he can his first two years, which is the optimal time for lung development.  It worries us that he's so small and that at his size even a cold or minor illness could put him in the hospital for weeks and jeopardize his pulmonary situation, requiring him to be on the ventilator longer.

The good news is that he will again be able to use a speaking valve, which caps his track so he can make sounds.  This one will have a special oxygen attachment so he doesn't desat while he's using it.

So all-in-all, a pretty good report.  Just need to grow some lungs, and fast.