Zadie and I drove down to CHOP today to see Dr. Javia, her ENT. He only sees airway patients once a month, and he's not seeing patients in March, so even though I knew we weren't really prepared to go back and see him, I didn't want to have to wait another two months to see him.
There were a LOT of trach babies in the waiting room! It was very exciting for me. Zadie didn't really care. We've seen one or two in the waiting room at other appointments, but today was like a convention. I've still never seen a trach baby in the real world!
Since the last time Zadie saw Dr. Javia in November, we were supposed to have been working on getting her to wear the Passy Muir valve all day. She's been sick on and off since then, so we weren't working on it while she was sick. And she's just really a little stinker when it comes to wearing it. I've gotten her to keep it on for 15 or 20 minutes at a time, a few times. But most of the time, she pulls it off after a few minutes. It's frustrating because we need to get her tolerating the PMV all day and then we can move on to the cap. She needs to be tolerating the cap all day and pass a sleep study before she can lose the trach.
So today, Dr. Javia said to come back and see him in six months. My heart dropped, because since the last appointment, I've had spring in my head as a possible time for decannulation. But, since we haven't really made any progress with the PMV, we're not really any closer. I am disappointed in myself for not pushing her harder to wear it. But all I can do is look forward and be tougher with her. I keep reminding myself that she WILL get decanned one day.