5-year old son just diagnosed with a Ctoma

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The past 2 years in Pre-K, my son has failed his tympanic membrane

screening. In October of this year I took his to his Pediatrician. At

the time my son had an ear infection, nothing severe. We were given

antibiotics and it seemed to clear up. He had no previous history of

frequent ear infection. But then we were back in the office in

November because of a large amount of discharge coming from his left

ear, which is the same ear the infection was in before. Once again we

were given antibiotics, but this time we were also given ear drops.

The infection seemed to go away again but he was left with severe

sensitivity to water and air in his ears. Once again we went back to

the office in December because of the sensitivity. And once again he

has an ear infection. When I told the Dr. about his sensitivity, the

Dr. seriously looked at me and said " I really don't think it is

hurting him that bad. " I was outraged! He didn't even give him any

kind of medicine or seemed concerned at all. There is a great history

of ear problems in mine and his dad's families. After I got home that

day I decided to take him to see my doctor, who is General Practice.

He sent him to see an ENT because of the sensitivity. He actually

cared! This is a happy 5 year old boy who has not really been sick and

now he is complaining of all this! I knew something was wrong!

Well we went to the ENT yesterday. After looking in the ears he comes

up and says " We have a serious problem going on in here. " All the

sudden he starts talking about the Ctoma and says we need a hearing

test, which my son failed, and a Cat scan. The weird thing- all the

infection was in his left ear and the Ctoma is in his right. We go for

the Cat scan on Feb 1. I had never even heard of this before. We know

he is going to have to have surgery, we just have to wait until after

the Cat scan to find out when we can do it. At the earliest it will be

Feb 11. I don't even know what all the surgery entails. All I know is

that it will take at least an hour and a half. I don't even know if

he'll have to stay in the hospital or come home that day. The Dr. told

me we would talk about everything when he calls me after the Cat scan.

I guess what I'm wanting is some suggestions on questions to ask the

Dr. when he calls. And I am also hoping someone can maybe give me

someone has went through this with their child, and it wasn't as bad

as I think its going to be, as the Dr. told me that in the 18 years he

has been doing this he has seen maybe 30 cases in kids under 10!

I know he will have to have multiple surgeries, his 2nd will probably

be to reconstruct hearing loss caused from the Ctoma and the surgery.

I am just so scared and worried about my little boy who seems

oblivious to what is actually going on!

Someone please help me. If it is easier you can just email me-

hilly_nae_85@... I just need someone to talk to who knows what

I'm going through!

Thank you and sorry it got so long!