A Slew of New Doctors

Happy Friday everyone! Here’s a video that might make your day. This is Jax playing with the Early Intervention team. The EI team comes once a month to help us track Jax’s developmental progress. He’s at the 11 month age level for social skills – that’s my boy! He loves, loves, loves hand play and songs like this. I’m looking into some mommy and me music classes for us to take. I think he’d have a blast!

Now, here’s some news that might not make your day. Jax has been referred to an ENT (ear, nose, and throat) surgeon and a new pulmonologist because there is concern that there may be constriction in his airway or that it may even be collapsing. There is also the possibility he may have scar tissue in his throat or airway from the 36 days he was on the ventilator. There are a couple of reasons we are going down this path right now:

1. He’s having a hard time healing from the bronchiolitis diagnosis that came over a month ago.
2. He has no other signs of sickness (i.e. no fever, no loss of appetite or energy, etc)
3. He has a very tight cough.
4. He sometimes wheezes when he’s taking a breath in. (“Regular” wheezing occurs on the exhale.)
5. After he coughs, he hitches and struggles to catch his breath.
6. This may explain why he has a hard time eating textures or chunky foods (because it may physically be getting “stuck.”)

The ENT surgeon will do a scope of his airway to check for constriction and scar tissue. I’m not sure what this is all going to entail. I’m assuming they will have to sedate Jax to keep him still, but maybe there is technology that I do not know about yet that will help get the scan without having to use drugs. This is scary.

The earliest available appointments with the new doctors are the first week of July. At that time, we’ll know a lot more! In the meantime, will you please send Jax some healing and positive thoughts? Please help us keep hope that his airway is healthy and that there is no scar tissue.

Author: Andrea M

Oh man, what an adventure! I went into labor unexpectedly when I was 23w3d pregnant. Jaxson was born weighing 1 lb 8 oz. A tiny little peanut, but boy was he feisty. He still is! We love it now, but we probably won't when he is a teenager. I write about our journey and all other things that come with it, including a brain tumor. We look forward to "meeting" you - come hang out with us...we're pretty cool. View all posts by Andrea M