An introduction finally

[Guest guest]

I am finally getting around to posting an introduction. Sorry it took

so long, with my son's surgery and the holidays things were hectic. I

am 35 (well, for 12 more days anyway, lol) and married for 16 years.

We live in California and have 4 children ages 12 to 8 months. My 12

year old son never had ear problems until he began school. He went

through a chronic ear infection stage and then had PE tubes. Never

had any more problems until this past summer. My 11 year old has had

2 sets of PE tubes and his adenoids removed. He is currently being

treated for an ear infection. My 4 year old son went through a series

of ear infections and had PE tubes placed two years ago and had been

ok since. In July my 12 yo complained of ear pain and had some

discharge. I took him in and because of our lack of health insurance

we had to rely on Medi-Cal. Well, we saw a nurse practitioner or a

student each visit, never a doctor. Since we had Medi-Cal they had to

prescribe medications in a specific order (Medi-Cal would not approve

certain medicines until others had been tried first) so he went

through Amoxicillin, Augmentin, Erythromycin, Zithromax, Cipro, and

three others, two being injections. Nothing helped and they cultured

his ear three times. All came back positive for Pseudomonas. Cipro is

the drug of choice for Pseudomonas. Problem is, they prescribed it to

him for one week then took him off, saying it was resistant. I now

know through researching it that the usual course is 2-6 weeks. They

finally gave up and said they couldn't get rid of the infection and

sent him to an ENT. Well, the ENT looked at his ear and said he

needed surgery to repair a ruptured eardrum, place tubes, and

posibbly restore hearing (he has 80% loss in his left ear) OK, we

wait on a referral approval. They denied it, saying that since he has

hearing loss it is considered a disability and would be covered by CA

children's services but we had to use their ENT. More waiting after

that for a referral to him. OK, two months down the road we finally

get in to see him only to be told it's just Swimmer's Ear and not to

give him drops or antibiotics and just blow dry it several times a

day and come back in three weeks. We go back and he says it looks

like it has granulized and orders a CT scan. Sure enough,

Cholesteatoma. It is so bad it had destroyed the three bones in his

inner ear. He says it's a congenital form but how the heck could

numerous doctors over 12 years, including one ENT placing tubes, miss

it? I think he was just covering for the whole Swimmer's Ear/sending

us away thing. So, he had a 3 1/2 hour surgery on Dec. 22nd. He had

his packing removed on Jan. 3rd. He is still having

grennish/yellowish discharge but a call to the doctor just got

me " use the blowdryer 4 times a day " I am concerned because his ear

is so swollen that it looks like it could just bust open. It

protrudes and is so heavy from being swollen that it hangs lower. The

doctor said it would just take time as it was " a very big surgery " He

is still having pain (oh and Medi-Cal won't cover his refill, they

only cover pain meds once every two months, odd huh) I did pay cash

for it cause he needs it. I'm just very concerned about the swelling.

I did catch him sleeping on it this morning though, ugh! Today was

his first day back at school after break so I wrote him a P.E. excuse

for this week. Am I just being overprotective? Thanks for reading my

long post. I look forward to getting to know all of you. Oh, and is

anyone familiar with the CA children's services. Hubby got a new job

so our income will be over the limit to get Medi-Cal/CCS but his

employer doesn't offer insurance until he's worked there three months

and we can't afford independent insurance. Can they just cut us off

in the middle of treatment?