Today was Sebastian's third day of "school" , which is really a playgroup at a local special needs daycare, but don't tell him the difference. He loves going to school and the last two times threw a fit when it was time to leave, he wants to stay and play more... lol.
Also , Sebastian has been battling some illnesses lately , a long lasting cold of some sort and a fungal infection around his stoma due to the litany of antibiotics he was off and on for 2 months fighting off a nasty round of tracheitis. Don't quote me here folks but I think we may in the clear - for the most part. Under the flanges is still rather irritated looking but the smell is mostly nonexistent and the rest of his neck look great. This is excellent news because now we can get the ball rolling again for decannulation ! Woohoo !
Also , Sebastian has been battling some illnesses lately , a long lasting cold of some sort and a fungal infection around his stoma due to the litany of antibiotics he was off and on for 2 months fighting off a nasty round of tracheitis. Don't quote me here folks but I think we may in the clear - for the most part. Under the flanges is still rather irritated looking but the smell is mostly nonexistent and the rest of his neck look great. This is excellent news because now we can get the ball rolling again for decannulation ! Woohoo !
Now I have to call the ENT to set up a date for surgery to remove his tonsils and adenoids, which we belive , why he is oxygen dependent while asleep - those enlarged adenoids. After he recovers there will be a bronching and maybe a sleep study depending on how his sats go while sleep with his cap on.
Last year we had a semi-epic battling trying to remove some really nasty chunks of granulation tissue (scar tissue) in a series of 10 bronching , equaling out to 1 a month for most a of year. Since he has went from last December without a bronch I am a wee bit concerned it may have grown back despite the Dr. repeated use of Mitomycin to heed the cells quick division and growth. Since he has stayed nice and pink during accidental decans and planned changed I think everything is status quo but still I am concerned for yet another hurtle to be placed in the way of getting this tube outta the kid's neck.
I've gotten to the point of "oh, well" with it - if it has to stay so be it , if we can get rid of it then -strike up the band !!! ... Just not the Doddlebops ... please !
1 comment:
He is so darn cute in that picture. I'm glad he enjoys school. It must be nice for him to be out and interacting with other kids in a acedemic setting for say.
I really hope you get the all clear to start on the road to decan. I pray that the scar tissue has stayed away and that it won't be a concern. He will do fine after the T&A and you will be just steps away from the big "D"!!
As for the Doddlebops....LOL!!! Elizabeth LOVES them!! We have two of their videos as we live in the middle of nowhere and we don't have cable or satellite. She first seen them on t.v. in the hospital and until that time wouldn't even watch t.v. So as much as I hate hearing them again and again and again and again...You get my point< i do have to love them because now she will actually sit and watch a little something on t.v. She also likes Elmo and Blues CLues now. We are even talking about taking her to a Doodlebops live concert in August. But I do feel your pain! LOL :)
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