Naked Neck Club Update

Medical

Apr 16

Things are going fantastic so far. Sam is rockin' the Naked Neck Club. The hole (stoma) in his neck is still fairly open, which means he is still breathing out of his neck, so we are not out of the woods yet, but it has shrunk a lot. Still can't wait for the day that bathtime is not terrifying for us. We are still doing trach cares, but they are taking WAY less time than we are accustomed to. Not suctioning him is definitely hard to get used to, but I don't think any of us miss it. All good things!

One of the things we have noticed the most is Sam's voice is a little louder and the things he tries to say are a bit more pronounced. He is definitely experimenting more with his voice and it's a beautiful thing.

Next week, we will see his ENT and he will determine if Sam's stoma (hole) in his neck needs to be stitched. At this point, it is very likely. This isn't surprising for how long Sam had his trach.

As mentioned, Sam's spinal MRI showed some things that need further investigation. One of the things they were looking for, but thankfully did not find, was a tethered chord. He will have a colonoscopy, endoscopy, and barium enema to further investigate. This could be some answers to questions we have had for a very long time. Only hoping and praying the answers are easily fixable.

This guy doesn't seem to catch a break, but he sure handles it all like a champ. If only we could all look at life like he does on a daily basis.