by Today, AJ was able to test out a Passy Muir Valve for the first time.
I’m not usually someone who cries – but this afternoon, I most definitely did. AJ’s airway looked good during his scope today. So good in fact, that the team here agreed it was time to let him try a speaking valve.
The Passy Muir Valve (PMV for short) allows him to breathe in through his trach. When exhaling, the valve closes and the air is then pushed up through the mouth and nose. A lot of kiddos don’t tolerate them well, some will only wear them for a few seconds. We talked about what would come next if he failed the trail (they measure the pressure in his lungs as he uses it to make sure it’s safe).
No part of me thought that he was going to tolerate it. Perhaps it’s because I like to prepare for the worst, or perhaps the NPs were preparing me for the worst. I fully expected him to need to have his trach downsized first, or another round of dilations. Or just to not tolerate it at all…
AJ, of course, had other plans. He was initially confused, but wore it and jabbered away for 30 minutes. He had a 10 minute break, we changed his trach to a size smaller just because it would likely be more comfortable for him, and he wore it for another 30 minutes.
Like. A. Champ.
I might have cried. More than once. But when you have prepared yourself to believe that you’re never going to hear your kid’s voice, hearing him laugh absolutely brought tears to my eyes.
Pretty sure he even thinks this is the best early birthday present ever!
Thank you to everyone for your prayers, love and support. I truly believe we wouldn’t be here today without them. He still has a ways to go (we will be back out here in a couple of months), but this is a huge step forward!!
