Aspies For Freedom

So my 5YO has been having ear infections off and on for the last year. She may have had them before, but she doesn't show typical ear infection symptoms so I only had taken her in a handful of times before last year. (Also we didn't have health insurance then so I was a bit more selective about what I took them in for, and no fever and no visible symptoms usually meant wait it out)

Anyway, its gotten to the point where she's been refferred to a ENT (ear nose and throat doc) and he suggested tubes and the removal of the adenoids.

So, the problem I'm having is that I don't really trust the doctor to mind his tongue while describing what he'll be doing at the pre-op appointment. I think I blew it by telling him that she was very anxious and I didn't want him to prepare her for it. I think he took me for a looney when all I was trying to say was that he needed to talk to her like she's a much younger kid on this because everything scares her.

I also look like a psycho because I'm visibly stressed and anxious-compensating for how anxious I know she is, but isn't showing it. (I told the nurse that she was anxious and she tried to make it better by having one of the tools try to 'eat' her which only made her jump...)

Anyway, the question is two-fold. What do I need to tell the doctor so he'll not say anything dumb?  (he said a few things already that disturbed me but Gemma hasn't said anything about them so I think she's forgotten)  and what can I do to alleviate her fears?  (I know I need to prepare her for exactly what's going to happen before and after, but how much do I need to tell her of what's actually going to happen?

The surgery is next Fri. and pre op is this Mon...

I'll be glad to have this taken care of, I think the ear infections might have a lot to do with her other behavior problems and I can tell those problems are taking their toll at school and I'd like to at least have her healthy so that if she continues having problems I could deal with them on a clean conscience. (if that makes sense...)

Poor little mite. I had dreadful earaches as a child. I eventually grew out of them, though, when I was around ten, I think. Apart from tonsilectomy ENT surgery wasn't too popular when I was little.

When any of my kids require surgery my approach is three-fold.

1. Get age-appropriate books from the library about children/animals going to the hospital. There are now excellent books about many different procedures.

2. Explain, as often as they want to, exactly what is involved from their point of view - for the littlies surgical details aren't required unless s/he'll be under local anæsthetic, just a general "Then the doctors will carefully remove the 'xyz' which is making you poorly"

3. Promise repeatedly that I will be there the whole time and that some things will hurt a bit, but that s/he will manage - no 'bee sting' analogies; in my experience a bee/wasp sting hurts much more than an injection of any sort!

Just a warning - with one of my kids the pre-med had the opposite effect to what was intended - unlike the lively little boy in the next bed who fell asleep, my little slow-coach became hyperactive and was bouncing around the room! It might be worth having a pre-med trial at the pre-op meeting unless you know from experience with her that she doesn't react like that.

First, when any type of surgery is involved it is a good idea to get a second opinion. If you are not comfortable with this doctor, it isn't a bad idea to find one you are comfortable with. As far as the procedure, if she will be having a general, then her cooperation keeping still is not an issue. This means that you can focus on how how the anesthesia will feel and what her circumstances will be be after the procedure. John had his adenoids out at age 7 and we did not go into great detail regarding WHAT was going to occur, but rather WHY it was being done (difficulty breathing at night) and HOW he would feel afterward (a little sore and groggy, but gets special treats to eat). Children are naturally self-centered, and this was what he was most interested in.  

Guess it really does depend on the child, though. Whatever you choose, simply let the doctor know the discussion strategy you have chosen for your child.  If this must be discussed in front of Gemma, then volunteer that she "already knows about X, Y, and Z, and you could perhaps answer any questions she has about those things." And give the doc a knowing sort of look that indicates that you might tear him/her a new one if this is messed up.  

I know how you feel Sarahjoke. It seems when it comes to doctors, anxiety translates into, treat the person like they're a crybaby for showing fear. I've had delt with this alot, and because I'm 25, they think oh well she's just being a stubborn brat, why doesn't she grow up. It's amazing, I don't understand if it's an ego trip or what? Like they really think humilating someone for having anxiety will help things, all it does is make the person feel more mistrustful. You might want to look through Amazon, and see if they have any tapes for children about what to expect before going into a surgery.

So, sorry, this turned into a rant, read at your own risk:

So... update... blech. I feel awful and I still have thiry something hours till the surgery.

I tried to do all of her "pre" stuff today and yesterday so she could have a whole day to not have to deal with anything medical. (a few props, it been a bad week)

On Monday we went to the doc's to check her over and watch a video on what was going to happen. True to my fears, it went into too much detail. Luckily, I had some distractions in my bag and the slinky (and my talking over the movie) kept her relatively calm. Then they mentioned labwork. Smart kid that she is, didn't ask until our way home what "labwork" is. I told her. She cried.

I also found out that the outpatient facility where she'll be going offers tours Tuesday night. So now I have to fit "labwork" and a tour into my Tuesday... not to mention baby sisters dance class. (pff)

I woke up and found her in her room, zoning out with a toy that flashes a light when you push a button. She was pretty zoned out, so I touched her on the shoulder and said, "are you okay?" She was actually pretty good after that, definitely not happy, but got ready and didn't throw a fit at all on the way in. (I was shocked.)

I know from past experience that Nick needs to come to any event requiring needles, so I took her in first thing in the morning before he had to go to work. She started screaming as soon as the nurse came in. It took three nurses and my very strong hubby to hold her down.   Poor thing. Seriously, couldn't they give  them something to calm them down? I also know from experience that for some stupid reason my default reaction to this sort of thing is to laugh. (I know, I'm a big jerky mom.) So I stayed outside with the other one.

After a little bit of the screaming the admins started acting nervous and asked me if I wanted to go in to help her out. I told them that this was pretty normal, and asked if they needed any help holding her down. (I hadn't seen that many nurses...). So they sent someone else in, some guy admin. He came back a few minutes later to let me know that they had it covered... and he wiped a tear from his eyes. "That's just so hard," he said. (I wondered what sort of lab this was if they'd never had a kid freak out from needles, I know her reaction is rather severe, but she can't be the only one...)

She came out a while later, she was shaking.   I took her out for donuts before going to school.

I was really excited about the tour, I think that ideally its good for her to know what's going to happen. They took her through each step, omitting anything involving the operating room. (thank goodness) So she was generally happy and pleasant, but definitely on edge. (I noticed that she kept flicking her fingers against her leg, like if you were going to flick a penny to watch it spin. When I saw her do that I grabbed her hand and she'd just squeeze it randomly.)  I think it made the whole thing too real, but I hope in the long run that will actually be better for her.

I also talked to hubby about him not going to the surgery. (I know that sounds counter-intuitive from what I just said...) The surgery seems like we'll get there and have to wait for an hour before going to surgery. I'm not sure if it will be busy waiting or bored to tears waiting... but Nick is notorious for getting jumpy in medical areas and Gemma is likely to be in full blown "space cadet" land and I can see a big collision if it didn't go just the right way. He agreed (and thanked me actually) and is going to stay home while I go. Hopefully I'll be able to keep a straight face. (I do better when i know it'll be longer time actually...)

Friends keep offering to go with me for "support" which I've tried to buffer with a "Oh, I'll actually be okay". Which seems to throw them off. People have a hard time with my "thinking/worrying" and "non emotional" disconnect. I guess it would seem wierd.

For now my brain has settled into full-out "scripting" mode so that I know how to react to anything she'd need me for.

Sorry, again, for the rant.

I was glad to read it, Sarah. I was looking for an update. As stressful as this may be for you, it sounds like you've got it managed. My thoughts are certainly with you.

i've been on the recieving end of this procedere. they can and will sedate the child(via  kock out gas) if you insist.

Thank you ladies.   I'm nervous, but I feel well prepared and feel like the way its going to happen is probably the best way it could be done... I'll let you know if she makes anyone else cry tomorrow.

good luck tell gemma that she'll be okay. but warning for  the wise that when the tubes fall out (they do) that i itches a bit like a  bug bite.

Ahhh... today is over.

So, it could have gone much better, but certainly could have gone worse.

I was actually really impressed by how well she went into the operating room. She had to walk in there without me, with a nurse. She was really scared, but okay. (Though later I heard her crying/screaming as they must have been trying to make her blow up the "balloon" -nice try guys.) I was really impressed at how well it had gone. I spent the entire waiting time thinking the following thoughts:

1. Wow, she's getting so much bigger, I can't believe that she did that by herself.
2. Maybe everyone's right and these fears really will lessen with time and experience.
3. I bet she'll be just fine today, maybe I should call one of her friends over.

Well, I'm sure you see where this is going...

So they called me into the back and she was pretty cranky. It was like the night terrors she sometimes gets, except that she kept rubbing her nose and she made it bleed. She was sort of flailing her arms around and would get upset with me or not be able to find me and call out for me, even though I was right there. Now, normally other people's blood does nothing more than send me into "mommy mode" and I am totally fine... My own blood or body discomfort will make me pass out, but others it totally fine.

I just kept focusing on the blood, it really wasn't that much blood at all... So, of course, i start to get hot, I start to really want this flailing child off of me... obviously I was working harder at keeping her on me, but I found a nurse and told her I wasn't feeling well. All of a sudden I could see about eight nurse heads in my tunnel vision. It was awful, and embarrassing. Thankfully they wheeled us to a separate room with a bed and we sort of just cuddled together and she calmed down much easier. (We had been right off the main hallway earlier, so I think seclusion helped both of us.) It was pretty awful for me, though I think at the time Gemma was still mostly out of it so I think she has limited knowledge of how much I botched it.

They called Nick and he came and hung out with us for a while and it was all okay. Truth be told I was totally fine once we got into the other room... the nurses gave me a coke and then I was able to help Gemma settle down. She wasn't a happy camper, but they gave her something to calm her down. (could have been morphine, could have been tylenol, don't know...)

By the time we came home I was totally wiped out... but Gemma was pretty keyed up. (Thanks for the warning Tigger.) They had told me she would fall asleep on the way home, she didn't. She didn't sleep at all until gave her her dinner tonight and laid down with her and told her calming, slow stories until she finally fell asleep. Luckily Hubby let me take a little nap (almost passing out makes you sleepy, apparently) earlier in the afternoon so I'm much better.

But, holy crap. I didn't expect roses... I expected to take care of her, not for her to put up with me being dumb. (I know I couldn't help it, logically, but I'm pissed at myself anyway.)  At least its all over, for now, and I can get on with things.

PS- when she fell asleep this evening I was shocked at how quietly she did so. She's usually a heavy sleeper... I guess not trying to breathe around enlarged adenoids is helpful!

Wow... that's so long. Sorry guys.

THe main thing is - you both survived!

I'm really glad she's OK. And you didn't botch it - your reaction actually helped you to get what you both needed - a separate room! Yay for Sarahjoke, the best mommy ever!

Yay Sarah What a day you had! Glad that everything went Ok and that you both are doing well.

My aspie son got tubes in his ears and adenoidectomy at the same time. He handled it OK. The hospital let us take a tour and walked us through the recovery room, etc. IIRC he was a little anxious but more or less handled things well. He was 6 then. I didn't mention anything about pain or agony or gory details, I just told him that he would be getting tubes in his ears and then would be able to hear all sorts of things.

One unexpected detail: after he got the tubes in, his ears were extremely sensitive, and he would scream at the slightest noise...even the car radio with the volume turned down really low. My ears are always sort of tender, but his were really extreme for at least a week.

If I could do it again, I would have planned and arranged for things to be excessively quiet- no clanging of pots and pans, etc.

Sorry, didn't see until later she'd already had it! Glad she's OK.