Friday, March 25, 2011


Man, does my boy have a beautiful neck :) It's hard to believe it's been an entire week since Samuel's trache came out. He has been a rock star! I'm convinced he is happier without it. At the very least, he is happy... and DB and I are definitely happier without it!

A few photos from the big day below... I did get the actual trache removal on video, but A - not sure how to get it from camera to blog, and B - not sure anyone really wants to see it. Ha ha!

Also, a few more details... besides taking the trache out Samuel did have a surgery to remove a bit more granulation tissue (scar tissue) inside his airway. Luckily it was no big deal - many kids have a lot of granulation tissue which can postpone the removal of the trache.

We also re-tested Samuel's vocal chords, and unfortunately the results showed that the left one is definitely immobile. That was the result a month ago, and again during this surgery... but since sedation can cause faulty results, this time they also stuck a flexible scope down Samuel's nose while he was awake so they could watch the chord when he actually talked/cried. Very sad. But, at least we now know what we're dealing with... the chord was most likely damaged during his heart surgery (PDA ligation) when he was a wee 2lbs. Apparently the nerve comes down and wraps around the aorta, which is only millimeters from where Samuel's surgery was done. What we don't know is whether it is permanently immobile/paralyzed, or whether it is healing. They heal very slowly, but we should know in the next year or so.

The docs were very impressed with Samuel's voice :) They think his body is compensating... our bodies are so incredible. Downsides to an immobile vocal chord can be trouble swallowing or differences in quality of voice, for example very hoarse or very breathy. But, this immobile chord should not slow his ability to speak and pronunciate - yea! Onward! Plus, if either of the above are really bad, which no one is anticipating, then there are treatments and procedures that can help. But again, the docs are very happy with everything Samuel is doing :)

Decannulation Day...

Hangin' with DB prior to surgery - Samuel was all about daddy that morning!

Close up of his trache ties...
Samuel has had these tied around his neck for nearly 2 years. Yes, they get changed daily, but they are only off his neck for mere minutes at a time, then they are back in place.

Another close up, this time of the front with his cap in place.

I know, I know, another close up...
but it's just crazy to me that THIS has been his airway since June '09!
The things we take for granted - sheesh.

AGH! The trache is OUT!

Happy as pie :) I'm not sure Samuel understands what all the fuss is about :)
No trache, but bandages covering the stoma (hole in his neck).

All of a sudden I'm realizing I don't have a photo of Samuel's neck with no trache ties... seriously! I've been staring at it for a week now! Soon.

The day after decannulation we got to go outside for a bit...
I'm pretty sure Samuel thought that getting decannulated meant he would get a few days off from the eye patch. Ha! Not so much :)

Best way to get a little man to use an inside voice?
Goggles, of course!

My friend, Sarah, and I were having lunch but Samuel had already eaten and was a bit antsy. She reached for a toy (she had two kiddos with her, too) and pulled out these goggles. Samuel loved them! I think he was amazed that when he looked through them... everything was blue! Love it!

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