10.1 & 10.2

There is always a plan...the plan is always to adapt to the situation and keep on truckin'.


To relay the mornings activities, I have to go back a few days. Last Friday we finally took Sam to the dentist. I had definitely been avoiding it on some level knowing that we were going to have some issues, but with a surgery on the schedule thought it was best to bite the bullet in case anything needed to be done under sedation. Wise decision.


So, it was a little worse than expected and we discovered (after 4 adults holding him down) that....

1. He had 6 cavities (A, J, K, & T; then see #2).

2. He also has some tooth gemination going on in his 2 front teeth. As I have come to understand, it is when two teeth develop from one tooth bud...resulting in extra teeth. (awesome since we don't have enough room for the normal amount). There was significant decay between the teeth (and decay into the pulp) so we were given a very poor prognosis of saving these. Yes-his 2 front teeth.

3. Finally, the x-rays showed some pretty "odd" permanent teeth and there is question whether we will even let them come in due to deformities. Basically, we were told to prepare for a regular schedule of distracting teeth for the next decade.

So, this morning we thought the plan was...go in for dental work + laryngoscopy & bronchoscopy. We were fairly certain they were going to pull Sam's front teeth and trach, but actually came home with 2 front teeth & trach.

Right off the bat, ENT tells us because of the signifcant dental work she is not authorizing decanulation for today due to swelling issues, bleeding, drainage, etc. Best case scenario we come back next week and do it then...then we get the reminder that nothing is certain.

Our ENT is highly qualified and we respect her opinion and are confident in her abilities. She happens to be (hands down) the most conservative member of our team. We have always thought this was smart since her main responsibility is airway. So when she came in after the scopes to tell us she wasn't going to authorize decanulation and all of the reasons (as diasppointing as it is) we trust our planning in picking the right physicians and listen to her expertise. She is always impressed with all Sam has accomplished and how healthy he stays and doesn't doubt we could remove the trach and be pretty safe. The concern arises if Sam ever got sick. Since airway & nose are so small for Sam to begin with, small respiratory infections or congestion can get out of control very quickly for us and if we remove our "backup" airway we put him in a very difficult position. There is a diagnosis of 'difficult airway' that Children's gives to about 100 of the kids they see...and as a whole they see 1000's. She explained the criteria is very strict to keep that list as short as possible because only a handful of people within the system are allowed to work on those kiddos due to the expertise required to even get in to the airway and we are still on the list. As long as we remain on the list we will continue with the trach.

"You all have worked to hard to get where you are for a bad cold to result in devastating consquences". We can certainly understand that.

The good news is we do not require another jaw distraction or any other surgery to make the area bigger (it would not address the area that is too small). So, hopefully with time and some growth we can move off of the list and on with decanulation. She was as disappointed as we were but we are all on the same page and in agreement. We will try again next year and hope that Sam's airway has grown enough to get us off of that list.

Dental went a little different than expected in that we filled 8 cavities and came back with our 2 front teeth. He did 4 silver crowns in the back, 4 caps, and 2 root canals. There is a good chance the front tooth (where the root canals were performed) will still fall out but we will see how it goes.

So instead of staying overnight in the original plan we are home. Sam is snoozing away and Jack has been promised a Star Wars marathon to allow us time to digest...keep on truckin!