3 yr old just had c-stoma removed

[Guest guest]

Hi, I now raise my 3 yr old Great Niece as a foster child.

Considering adoption too. Anyways for over 2 years now she has been

battling terrible ear infections. The smell was so nauseating. The

drainage was gross. It took 2 years for my parents to find an ENT to

see her because of the Medi-Cal. She went to have tubes put in and

the c-toma was diagnosed in the right ear. This ear had already been

tested and determined to have moderate hearing loss. Within 2 weeks

of that, she moved in with me. On her 4th day with me we went to see

an ENT. (Referral was done by the ENT who did the tube & diagnosed

the c-toma) What a shock we were given....she also had a first

branchial cleft anamoly that would have to be removed prior to the

removal of the c-stoma. In Oct. she had the 1st bran.cleft anamoly

removed. She did great with the surgery, was not afraid to return to

the Dr's office. She had 2 surgeons working together for that

surgery with a 3rd observing. The 3rd is the ENT who just did the

removal of the c-stoma.

Just this past Monday she had the c-stoma removed and part of the ear

canal reconstructed. She was in surgery for 5 hours. We ended up

being admitted that night instead of going home. I was actually glad

of that since I have 5 other kids at home.

The surgeon also had to remove 2 of the hearing bones. We just

started treatment with ear drops last night. Very difficult with the

ear draining from the surgery. This little girl is a tough one.

However, having to keep her home from daycare/preschool for 2 weeks

is miserable for everyone.

I still am seeking information about what was done in the surgery (I

couldn't make yesterday's appt and what still lies ahead. I know she

will have another surgery in about 6 months to confirm the c-stoma is

gone and to reconstruct what they can of the hearing bones.

Currently her ear is sticking out from her head. Will this go away?

Will the ear lie flat again? So far this girl is a trooper. She

doesn't throw a huge fit about going to see any of the 3 ENT's she

has. Is it normal to have so many? What do we have to look forward

to in the future for her? How long do they follow up on the patients

after removal of the c-stoma?

The name that I have heard for her surgery was a radical

temperal ...... don't know the rest....

Thank you in advance for any comments and insight.

Mom to 6 under 11 yrs.....EEKKKKK

[Guest guest]

Poor kid, and poor mom!

What a tough ordeal you're going through right now. After my surgery,

my ear stuck out far from my head, and looked very strange. This

settled down after several weeks, which will probably be the same

with your daughter.

>

> Hi, I now raise my 3 yr old Great Niece as a foster child.

> Considering adoption too. Anyways for over 2 years now she has

been

> battling terrible ear infections. The smell was so nauseating.

The

> drainage was gross. It took 2 years for my parents to find an ENT

to

> see her because of the Medi-Cal. She went to have tubes put in and

> the c-toma was diagnosed in the right ear. This ear had already

been

> tested and determined to have moderate hearing loss. Within 2

weeks

> of that, she moved in with me. On her 4th day with me we went to

see

> an ENT. (Referral was done by the ENT who did the tube & diagnosed

> the c-toma) What a shock we were given....she also had a first

> branchial cleft anamoly that would have to be removed prior to the

> removal of the c-stoma. In Oct. she had the 1st bran.cleft anamoly

> removed. She did great with the surgery, was not afraid to return

to

> the Dr's office. She had 2 surgeons working together for that

> surgery with a 3rd observing. The 3rd is the ENT who just did the

> removal of the c-stoma.

>

> Just this past Monday she had the c-stoma removed and part of the

ear

> canal reconstructed. She was in surgery for 5 hours. We ended up

> being admitted that night instead of going home. I was actually

glad

> of that since I have 5 other kids at home.

>

> The surgeon also had to remove 2 of the hearing bones. We just

> started treatment with ear drops last night. Very difficult with

the

> ear draining from the surgery. This little girl is a tough one.

> However, having to keep her home from daycare/preschool for 2 weeks

> is miserable for everyone.

>

> I still am seeking information about what was done in the surgery

(I

> couldn't make yesterday's appt and what still lies ahead. I know

she

> will have another surgery in about 6 months to confirm the c-stoma

is

> gone and to reconstruct what they can of the hearing bones.

>

> Currently her ear is sticking out from her head. Will this go

away?

> Will the ear lie flat again? So far this girl is a trooper. She

> doesn't throw a huge fit about going to see any of the 3 ENT's she

> has. Is it normal to have so many? What do we have to look

forward

> to in the future for her? How long do they follow up on the

patients

> after removal of the c-stoma?

>

> The name that I have heard for her surgery was a radical

> temperal ...... don't know the rest....

>

> Thank you in advance for any comments and insight.

>

> Mom to 6 under 11 yrs.....EEKKKKK

>