Re: Digest Number 44

March 23, 1999

From (CVID)

I'll try to get as much of this off as possible before I head out...

Kathleen - Wow... what is happening with Lucas is exactly what happened

to me when I was little (or so I'm told). I had three sets of tubes,

and the first two fell out the way they're supposed to, and on the third

set, one ear's tube fell out and the other dug its way under the

eardrum, got sealed in by new tissue that grew, and required surgery to

get it out. I also had my adenoids out at the same time. Sound familiar?

To let you know my course: I already had some hearing loss from the

constant ear infections and they were worried that I would lose a

significant amount on that side due to the complications. I had the

surgery (my only memory of it was throwing up - probably from the

anesthesia - after the surgery, and when I threw up, my ear spurted

blood. Pretty gross, and pretty traumatic for a child, but otherwise no

harm done. They said it was pretty normal - so, just in case that

happens, don't worry). So after the surgery, I had hearing tests every

month or two - everytime I went to the ENT to check on how this healed -

but unfortunately, it took forever to heal. After about a year without

the holes closing, they opted to graft some tissue onto my eardrum. As

soon as they said that, one of the holes closed (must have gotten

scared!), but the other remained open. They were worried that the scar

tissue from the graft would harm my hearing, but if I ever wanted to

swim or take a bath without Glow in the Dark Silly Putty (what we used -

it doesn't stick in your hair and worked better than the ear plugs they

fitted me with... makes for interesting childhood pictures in the

summer!), I had to have the graft. But in the end, after the surgeries

were finished and my grafts had taken, my hearing was the same as it had

been before that. I had about 50-60% hearing on the right (where all

this happened) and 70-80% on the left. In the last few years, I lost

more hearing due to aminoglycoside antibiotics (Gent, Tobra, Amikacin,

etc.), but before last year, I never noticed any deficit. I tended to

sit near the front of the class and did okay, and never needed speech

therapy or anything, which they'd told my mom I might need. Since the

recent losses, I find that I say " excuse me " or " I'm sorry - I didn't

hear that " more than average (drives a couple of my more " mumbly "

friends crazy!), but otherwise, I am no worse for the wear.

I hope it doesn't seem like I'm minimizing your frustration... I truly

understand what it's like to hear YET ANOTHER problem... and you're

right, Lucas has enough to deal with, and so do you, and it doesn't seem

fair that there's still something else. When they told me about the

recent hearing loss last year, it was at the end of a long few months of

medical problems and uncertainties, and it was simply the straw that

broke the camel's back. I went straight from my ENT's to my internist's

office, one floor below, and even though I didn't have an appointment,

her nurse got me in a room. I must have looked stricken or something,

because they were all VERY nice to me. As soon as I saw my doctor, I

just started crying (which I hadn't done throughout a number of

life-threatening illnesses and really painful procedures), and she was

great about it... she just said " I'm sorry - you shouldn't have to deal

with this... but we'll make sure we're doing everything possible to

prevent it from getting worse. " She also looked teary, and admitted

that at times, it's very hard to take care of me, because I am so much

like her and all her friends. We have the same goals, the same dreams,

similar personalities, like the same jokes, value similar things. So

when she can't fix me, it's like she can't fix herself, or one of her

close friends, or her daughter. She cares so much about me, and I know

she would do almost anything to see me get better, so it's just as hard

on her when things go wrong or we can't improve something... I think

this kind of " identification " has at times compromised my care with

other doctors (some residents, for example, were terrified to admit when

I first got sick that there was something they couldn't identify or

cure, because I'd gone from very healthy to very unhealthy in a short

period of time, and it just as well could have been them... it was

easier for them to blow it off or deny there was a real problem), but

with her, I think it just makes her dedication stronger. Anyway, that's

just a long way of saying I do know how hard these things are, and I

wish you and Lucas didn't have to go through it. And also perhaps a way

of looking at why the doctors sometimes do what they do - I think we

scare them as much as the illness scares us... because it could be them

or their kids or someone else they couldn't " fix. " Certainly doesn't

explain why no one saw this coming earlier (and I'd ask them why they

didn't), but maybe just helps to see another perspective. I hope things

go as well for you guys as they did for me - it takes a while, but I

hope the healing process is as complete and his hearing isn't affected.

Donna - I am THRILLED that you and Walt had a slightly easier night.

Maybe I'll try that onion thing when I go home!

Quentin - I am sorry you won't be as active in the group anymore, but

very happy that things have gotten to a point with Matt that you feel

comfortable taking the new job opportunity. I promise I haven't

forgotten about your question, but I've been away from my books and

wanted to read a few things before I responded in full. It will be

done, once my life returns to " normal. "

There are more I need to respond to, but they just dropped off my oxygen

and I'm about to go home! Yeah!

Take care, all-

March 23, 1999

I am feeling pretty upset about Lucas today. We found out that Lucas

has a chronically perforated ear. They say he has extensive scarring &

that the tube he got at 2 years old seems to have somehow made a hole in

another area of his ear & gotten lodged underneath. They say he will

need a surgery to repair the hole & probably another to repair the

damage to his hearing, not to mention the adenoid surgery that they feel

is important to keep infections away. The whole process is risky & he

could lose even more hearing. I don't know why no one has seen this

before. As much as he gets sick & goes to the doctor someone should

have seen this before it got this bad. He doesn't even understand it

all. Besides his medical stuff the Asperger's makes his life pretty

difficult & he is so brave about it. Kids are always teasing him

because he is sick a lot & because he doesn't seem to understand how to

act socially. This just seems like more than anyone deserves, much less

a child. He tries so hard to be strong & brave & it makes my heart

break to think of him having even more problems. My husband says I

should wait & see what happens before I worry, but that is so hard. I

knew all of you would understand. It is so hard to explain to

everyone. Even my husband just doesn't really grasp the entirety of

Lucas' problems. I do all the research & talk to all the doctors. He

shows up when Lucas or I ask & is there to lean on, but doesn't seem to

really hear what is going on. Sometimes the weight of all of this,

knowing I can't step back & let someone else help while I take a break,

just seems like too much. God, I hope that hubby's transfer off the ship

happens.

I just had to get that all out.

Thanks for listening!

Kathleen

March 23, 1999