Refusing and crying

[Canteau24]

:scream:: Gabe my 7 year old is scheduled for the monti/mace surgery in june, we (as parents) have been waiting for this exciting freedom to come for him finally! He on the other hand right now wants to be out of diapers and wants the freedom also but is PETRIFIED *spelling* and has just been like ok about it never really spoke up or said anything until tonight after "potty time" he was crying saying he didnt want surgery at all because they use a tiny knife on him..... idk what to tell him, ill be lying if i say they dont do that! Any help from other moms whove been through this or sb adults that rmember getting it done when they were younger? He just breaks my heart seeing him like this :kleenex:

[dahliafaolan]

The only thing I can suggest is that you tell him that they're going to give him a special medicine that's going to put him in a deep sleep. And while he's in this deep sleep, he's not going to feel a thing. And when he wakes up, the surgery will be all over and he'll be able to play all the video games he wants. lol (With my mom, it was books she bribed me with, but I figure a boy will respond better to a video game bribe.) Maybe you can say the underwear fairy will visit him while he's in the deep sleep. lol Just don't let your family do like my family did to me when I had it. I was much much older when I had my version of the monti (the cecostomy). I was 18 when I had it done and that year, EVERYBODY gave me panties for my birthday party...

[Lifeisgood]

I never had this particular procedure done, but I was diagnosed with SB and a tethered spine at the age of 9 and had my surgery about a month later. One of the things that I remember helping me was that I had a tour of the hospital ahead of time. They let me look into an OR, brought me to the pediatrics unit (showed me the playroom!!!! INCENTIVE!!!!) and even took me to the ICU to let me see the room I was going to be in after the surgery. That made the hospital seem less scary. If he is afraid of being in pain, tell him that while he will probably have pain as he is getting better, they can give him medications to help make him feel better. And as Dahlia said...bribes never hurt!!!

One other really important thing that helped me was that my doctor, nurses and parents really helped me to feel in control of my recovery. I was allowed to ask the doctor 3 questions each day about what I could or could not do (can I sit up, can I go to the playroom, can I eat solid foods) and each day he would say yes to at least one thing (as long as my requests were within reason!). This was very helpful to me.

Dahlia, I would have been absolutely mortified if I were you getting all those panties!!! I guess I have that to look forward to one day at my bridal shower! ;) Of course, I gotta find the man first though, lol.

[NerdaliciouS]

Does he have a favourite stuffed animal or toy? I know I could always bring something in with me. Sometimes that adds more comfort! I also agree with the deep sleep and video game thing, though. Tell him he'll never feel or see that little knife. And um, a bribe I had after one surgery was ice cream, haha. I got to have some ice cream when I woke up. Umm, hmm. I dunno, tell him that things will be fine and it'll be even better after it's over? I've never had the procedure, but yeah. Bribes FTW! I guess just comfort him. Maybe ask him questions? Get him to ask the doctor questions? Umm, I'm not necessarily sure how he thinks or feels about stuff, but you could always tell him that he'd have a story to tell about his experience! I know with certain parts on my body I'd be like "LOOK AT MY 'BATTLE SCARS'" lol. But yeah, that's all I can really think of!
:(

And I'd be beet red if all I got were panties for my birthday. O.O

[dahliafaolan]

Ordinarily, ice cream was my bribe for surgery too, but abdominal surgeries they don't let you have real food for a while afterward. I think for the first two days, they kept me on the clear diet and then let me move up to real food.

The scary part of that birthday party was the fact that the sexiest panties I got that year were from grandma...

But my family has no shame. They did the whole lingerie thing for my 21st birthday, but I was cool with it because I got ACDC panties. Though it was a bit uncomfortable when my boyfriend at the time's mother gave me a sexy nightgown and robe. I think she was trying to tell me something...

[NerdaliciouS]

Ohhhh, I didn't know that. Cross out the ice cream idea then! I remember one surgery being so hungry and all I could eat was red jello before and after...

That's kind of strange...GO GRANDMA!!!!!!! And at least you got cool underwear. That mom sounds kinda creepy, though, lol.

But thanks for correcting me on the food thing!! I mean no harm!

[LisaJoy]

Dahli, you're making me laugh!

Canteau24, you should find out if the hospital has a child-life specialist or child psychologist on staff. This kind of fear (fear of the unknown) is very common in children and most children's hospitals have specially trained staff to help the kids. I also think the advance tour is a great idea! And bribery should be in every parent's arsenal.

[Summer25]

I'm 26 years old and STILL cry and scream everytime I know I have to have surgery! I actually talked my mom out of a shunt exploration because I wasn't ready and basically scared myself out of having symptoms...no lie. I haven't had my usual symptoms in like 3 weeks. I just had my first one today. Sit him down and talk to him. Answer the questions that you can answer and then write the ones down you can't answer for the doctor to answer. That way he feels he knows what is going on. Telling him he will be asleep during it probably won't work. Just make sure he knows why he has to do it and that in the long run he will be happy it was done. Tell him all of the things that he will get to do because of it later on in life. Like going out with friends or just being able to do whatever he wants without accidents. I know he is only 7, but maybe waiting another year or two would allow him to see how it would help. I know for me, I was never given the option of not doing it. I know it may not be the best, but I do resent the surgeries that didn't have to be done or could have waited to be done. I look back all the time and say "Why didn't I stop that before it happened?" I just hate to see that happen to someone else. Believe me, I was so happy I did the mitrofanoff and ACE, but I wasn't able to realize that until I was in my later teens and was able to do what I wanted without my parents help. I always got something I really really wanted too...lol. One year I had like 10 surgeries in 3 months and ended up with a puppy...lol. Some how whenever I had a huge surgery I ended up with an animal of some sort. I got 2 dogs out of it...lol. Now that I'm thinking about it, that shunt surgery is looking kind of good now...lol. I have been trying to talk my parents into a puppy since we had to put my oldest one to sleep. So maybe a little bribe wouldn't hurt either.

[angel]

When my son had his spinal fusion there wan't a choice it had to be done. Knowing this I decided to shoot straight with him about it. When he asked me if it would hurt (knowing from personal experience) I told him yes there would be some pain. I also menitoned to him that he would be asleep through the worst part of it though and the first day out of surgery would be the toughest for him. I told him they would give him medicine to help him deal with the pain and every day after that it would get better and better. Before long it would just be a memory. When surgery came he was nervous I told him he would be asleep and when he woke up that the worst would be over. Then the first day when he complained he would push his pain button. I didn't tell him that medicine didn't come out every time he pushed it. I let him think it was working every time. During his surgery they took a rib to use to fuse his neck with and he had two incisions. He didn't know about the rib and he never complained about it so we just didn't mention it and he never seemed to have a problem with it. He figured it out when he went to scratch his back and felt the glue and the scar. It freaked him out a bit when he felt it then i came clean about that and told him i figured if he didn't know it was there he wouldn't worry about it. it worked because he said it never did hurt.
The anticipation to me has always seemed the worst part of any proceedure. Once it is done every day that goes by you feel better even if it is just a little bit. I kept refering to it like climbing a mountain. The waiting was climbing it, the surgery was when we were at the top and the recovery was the easy walk down the other side. He seemed to understand that pretty good.

Angel

[Canteau24]

THANK YOU ALLLL SO MUCH!!! I feel much better! I am pretty straight forward at it and am the mother of all bribes haha he knows it too! He is just scared and has never had a planned surgery so we all are taking it different because it is anticipating it... i will def call the hospital, he knows the ins and outs of it already but maybe a refresher course and talking to someone there also will help. He plays tons of sports and i told him he can play and play and not have to leave places by a certain time for "potty time" he has to be on the toilet every night by 715 right now which gets in the way of somethings and he gets angry. He is a very mature 7yr old .... well get through this i know just it is so nice to hear other people tellling me im not the only one or he is not the only one! I think the sooner its done the better for him, so he can be established with a routine early in life. I let him decide the surgery for his legs whether he wanted to quit walking with a walker and hkfos or not and he said def not... were let him run a lot of his life when it comes to drs and things, sometimes i dont know why i give him so much control over it but the way i see it is he is the only one who really knows how he feels about somethings. Another random question, with the cath through his belly button he has to cath through the night correct? once again thank you thank you thank you :)

[Gymp]

The anticipation to me has always seemed the worst part of any proceedure. Once it is done every day that goes by you feel better even if it is just a little bit.Angel

Yeah me too!

Tell him you'll be there for him the whole time he's there,before and after the surgery.

[Dodger67]

Whether he will need to get up in the middle of the night to cath depends on his bladder size and when and how much he drinks in the evening.

I'm an adult so maybe the comparison is not so useful but here goes anyway:
I have a capacity of about 400cc, if I stop drinking around 8pm and cath at about 11pm before going to bed I'm usually ok until about 7am.
If I drink later than 8 I find I have to get up around 3-4am!!!!!

[Canteau24]

ok thats good news! Either way im up at night so i have no problem doing it for him until hes older but was wondering future wise .... thank you

[LisaJoy]

Canteau24, I think you are awesome for empowering your son to make some of his own choices about his health care. Obviously he is very young and you can't just give him free rein, but by involving him and gradually expanding the scope of his decision-making, you are paving the way for independent adulthood! I applaud you.

[Summer25]

I have a mitrofanoff and never cath after about 11pm. I however, also had a bladder augmentation to make my bladder bigger. I also, drink through out the night and it doesn't bother me. It might leak a little, but I just keep a 4x4 gauze over the stoma.

[dahliafaolan]

I just cath before bed, whenever that happens to be and do it again when I wake up. I do leak a little, but I wear diapers to bed anyway. (I never got full bowel continence. The cecostomy prevents most accidents but I still like the comfort factor of knowing I'm protected if I have an accident.)

[lonibaloney]

My daughter just had surgery and I can honestly say the thing that helped the most was a family friend that just happened to mention about the tie he had surgery, She just lit up and started asking questions. She was still apprehensive about the whole thing but i did tell her over and over that she really wasn't even gonna feel a thing. She was going to go into a deep sleep and when she wakes up it will be over. Its the truth. I think the thing you don't think to prepare yourself for is after surgery. Coming off the anesthetics can be rough and you can't eat or drink for about 24 hours. That was the hardest part for me cause my girl was dying for some water. Anyway, constant communication with people they look up to can work wonders.

Good luck

[leila]

What a great thread! My 3 year old is about to have her first surgery since I've been her mommy. Thanks for the great ideas and the giggles (sexy grandma panties lol).

Kelly