Re: Re: swallowing disorder and enlarged tonsils

[Guest guest]

Hi Kris.

I'm crying my eyes out reading your post.? I am absolutely scared to death...and

then very very anxious at the same time.? I am hoping so badly that it will help

some of his issues.? He has gone under anesthesia 4 times for endoscopies and

has done just fine with them.? Of course, they were not surgeries...and a lot

shorter time under anesthesia...but, I feel that it is the right choice for the

long run.

He has never had pneumonia and does not have asthma or sleep apnea ... but, the

swallowing issues, gerd, hypotonia are horrible in themselves.?? No one has ever

picked up on the enlarged tonsils until this June's swallow study.? That amazes

me!!!?

Yes, I'd love to talk to you.? Please email me privately and I'll send you my

phone number.

Thanks!!!

[ ] Re: swallowing disorder and enlarged tonsils

i hate to write this, but i couldn't sleep at nite if i didn't tell

you our experience...

DD-kate, was born w/ hypotonia, laryngotracheomalacia ( floppy

airway), gerd, and an " upperairway " obsruction...ie-big

tonsils/adenoids, tachypnea (rapid breathing), sleep apnea, and big

time asthma....

kate was hospitalized just about every 3 months for recurrent

pneumonias, until the age of 2.5

her pulmonologist said all this could be resolved by tonsil/adenoid

surgery. well, back in our old town, NO-ONE would touch her ( she was

too sick and only a year old at the time)...but it

was our only hope, otherwise we may have lost her to being so

incredibly ill ALL THE TIME!

after an agonizing year and a half of constant illness and

hospitalization...we moved to a big city (Tampa, Fl) and after 2

months, on cue, she was

felled w/ SEVERE pneumonia...this was it for us.

we went to an ENT, explained the history, and this TOP NOTCH surgeon

took our kate on....

she was going to be admitted overnite...she came out of surgery, and

things went down hill QUICKLY...out of surgery @ 10 a.m. and by 5 a.m.

the next morning she was on a high pressure ventilator called an

oscillator...her lungs filled with fluid.

the pressure on her heart from the lungs being so heavy stopped her

heart at 6 p.m. the next day...nothing was done except for meds, and

as soon as her heart stopped (seemed like an eternity) we all just sat

back and watched her come back to life....

that being said....it was the toughest choice i ever made in my life,

the worst scenario i will ever live through BUT....i would not change

my decision one bit...this surgery changed her life...SAVED her life!!!

her tonsils were necrotic ( rotten dead tissue), and could have proved

fatal anyway, if they had ruptured and spread infection into her blood...

this was april 21, 2007....last year...kate spent 40 days in the

hospital...30 of those in ICU, 27 days on a ventilator.

today....kate is 3 going on 4...still small for age, but grew 5 1/2

inches in the year following surgery....not one single illness to

date, has never missed a day of school....never gets sick....normal

breathing....sleep apnea resolved...GERD resolved...asthma

resolved....feeding issues resolved...great attention

span....interacts....runs....plays....laughs....all the things we

never imagined her doing.she is the happy

healthy little girl that we never knew.....her first 2.5 years, kate

exsisted...just a tired sick little blob...didn't walk, talk, or

interact...

she began to walk two months out of the hospital, now she is working

on running and catching up...babbles like crazy, some verbal apraxia,

but coming along nicely....

this surgery saved her life....it changed every aspect of her life for

the better...but it nearly killed her...i did not have anyone to share

their experience before i had her surgery done....i hope i can help

and offer any support....please email me and we can discuss....i would

be willing to talk on the phone to answer any questions you may have...

i don't mean to scare you, but i wish i had known what we were getting

into....but i would do it all over again....it truly was hell on

earth, but it makes today seem like heaven everyday for our kate!!!

sincerely,

kris justice

>

> Hi!? It's in NH.

>

> I'm writing about my 5 year old son.? He has many issues...global

dyspraxia, hypotonia, dysphagia (aspiration on thin liquids),

dysarthria, adhd, gerd, hiatal hernia, abnormal heartbeat, and sensory

integration issues.

>

> On his recent videoflouroscopic swallow study it showed that he had

enlarged tonsils.? We took him to a ear, nose, and throat specialist

and found that his tonsils are HUGE!? They actually touch each other

in the back of his throat!? ? They are coming out this Friday morning!

>

> Has anyone else been down this road?? If so, how much improvement

have you seen?? I'm hoping that it will help his drooling and that we

may not have to thicken all of his liquids.? Time will tell, I guess.

>

> Looking forward to hearing from anyone with similarities.

>

> Thanks!

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