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        New Message Board Archives >> 2005 General Board Posts >> What would you do if it was your child??
        
(Message started by: Sean_C on Dec 21st, 2005, 7:33pm)
Title: What would you do if it was your child??
Post by Sean_C on Dec 21st, 2005, 7:33pm
Sorry for this post but the Holidays are here and there's no-one talking here so I need you to tell me what you would do if this was your child.

Colin my 3 1/2 year old was born with his insides outside. He survived 21 hours of surgery on his second day of life. The docs did a tremendous job putting back/sorting through flesh to make him as whole as they could. However his bladder which sustained severe damage is not working or growing. He's undergone additional experimental surgery's to try to make it better but have not worked with success.

Now here's my question.

Colin went for review again at childrens and he will be in diapers maybe forever if more experimental surgery does not work.

OR

They could make it so he could cathederize and be dry.

I said cathederize, and the wife says no. I said his mental issues from the teasing in school will far out weigh his physical issues, he can't go to school in diapers. :-/

She said no way, its Colins problem and he'll have to deal with it. We'll wait to see what happens in the future.  [smiley=huh.gif]

I said YOU ARE OUT OF YOUR FUCKING MIND IF YOU THINK I'LL LET THAT FUCKING KID GO TO SCHOOL AND GET HIS ASS KICKED ALL DAY LONG BECAUSE YOU THINK ITS HIS FUCKING PROBLEM  >:( I'TS OUR FUCKING PROBLEM. WHAT THE FUCK IS THE MATTER WITH YOU [smiley=huh.gif]

She refuses to speak to me which is totally cool with me because in know way shape or form will I let that kid go through that. No fucking way. I know how kids can be to other kids, and it ain't gonna happen  :'( She just doesn't get it [smiley=huh.gif]

So if it were your child, what would YOU do???????

Say what you feel. I need to know.

Sean......................................
Title: Re: What would you do if it was your child??
Post by Kris_in_SJ on Dec 21st, 2005, 7:42pm
Sean - I'm so sorry to hear about your little one.  As a parent, myself, I feel your pain  When my own daughter developed severe scoliosis in 6th grade, I remember thinking that I wished it was me rather than her that had to undergo the surgery.

Just a thought regarding the catheter .... They have things called leg bags that attach to the catheter and are held by a strap to the thigh.  With loose pants, no one in the world would ever know.  Go to the bathroom and empty the bag as needed.  The only problem might be those damned PE classes, which you can probably exempt him from.  In my way of thinking, it's a hell of alot better than diapers!

Meantime, as medicine advances, so might a surgical solution become available before he reaches a "delicate" age.

Many Hugs.  Vent Away!

Kris
Title: Re: What would you do if it was your child??
Post by BlueMeanie on Dec 21st, 2005, 7:43pm
Sorry to hear about your son Sean.  :( I can only imagine how difficult it is for you and your wife especially at this time of year.

It sounds like you already made up your mind. I have no idea what to suggest, but I think maybe you should at least cool off and think about it for awhile. Don't mean to sound rude, but with that attitude, you're only gonna make things worse for the whole family.

Venting is a good thing sometimes.
Title: Re: What would you do if it was your child??
Post by Sean_C on Dec 21st, 2005, 7:45pm
Kris they would use pig intestine in lieu of a bladder in his body and make it so he could cathederize through his belly button. The body thinks the pig is human and won't reject it ;)

No bags required   ;)

Hows that for modern science ;;D

Sean...........................
Title: Re: What would you do if it was your child??
Post by Jonny on Dec 21st, 2005, 7:48pm
It is totally not fair that you have to even make this damn decision, Bro!!...But I agree with you on this!

:'(
Title: Re: What would you do if it was your child??
Post by Sean_C on Dec 21st, 2005, 7:52pm
Blue my wife shut me out as if I have no say, and I should.

I just have a thing about my kids, I just don't want her to say later on that we should have done this earlier. Because I know thats what would happen.

I just don't see her logic, and Colins gonna pay the price, no what I mean. Loss of dignity is an aweful price to pay :(

Sean........................

BTW I'm having a hard time cooling off :-/ She lives here too ;;D
Title: Re: What would you do if it was your child??
Post by Kris_in_SJ on Dec 21st, 2005, 7:54pm
Sounds like modern science has already passed me by Sean.  Catheterize as needed.  Sounds a whole lot better than leg bags and/or diapers.  We'll support you whatever you decide.

K.
Title: Re: What would you do if it was your child??
Post by Mattchew on Dec 21st, 2005, 7:56pm
self  esteem means alot to a child, hell all of us. I would have to side with you Sean
     
Title: Re: What would you do if it was your child??
Post by catlind on Dec 21st, 2005, 8:03pm
Sean, I am truly sorry to hear of your difficulties with Colin.  I can't begin to imagine the ins and outs of decisions like this.

What I can do is relate a story of a dear family friend.  My Mom's best friend Glenda had a daughter born with Spina Bifida.  This is some 20 years ago now, so there were no surgical options available.  Jennifer (that's the girl) had to catheterize herself from the time she was very small.  She went through school with no difficulties at all, and had no trouble catheterizing herself.  For her, it was far better than the option of wearing a diaper.  No one even really knew that she had to use a catheter.

That being said, if you want an honest opinion, I'll give it.  I'm at a loss as to why your wife would be willing to risk Colins life with experimental surgeries, and then be unwilling to risk a relatively simple solution as an alternative to the child having to spend his life in diapers.  As Colin gets older, you can be sure that he will not wear diapers.  He may tolerate for the first couple of years in school, but think back to school, as soon as you got to a stage where you could think on your own, and that is typically the end of 1st grade and beginning of 2nd grade, he is going to have a great deal to say about having to wear a diaper.  You can be damn sure when he enters middle school and high school he'll have nothing to do with it, and then may well bear resentment to his parents for leaving him in such a quandry.

Just my thoughts on it, take it or leave it as you see fit, it's not meant to be harsh toward either you or your wife, just an outside objective opinion.  

Whatever the results, I wish you all the best with the trials ahead of you.

Cat
Title: Re: What would you do if it was your child??
Post by Jonny on Dec 21st, 2005, 8:04pm
Hey Bro, now im pissed!

You tell the wife to put on a diaper and shit in it, then tell her to sit in it for an hour or two.

I dont know all the details, but your want for your son is  what needs to be done given the info you gave us.
Title: Re: What would you do if it was your child??
Post by Sean_C on Dec 21st, 2005, 8:11pm

on 12/21/05 at 20:03:03, catlind wrote:
Jennifer (that's the girl) had to catheterize herself from the time she was very small.  She went through school with no difficulties at all, and had no trouble catheterizing herself.  For her, it was far better than the option of wearing a diaper.  No one even really knew that she had to use a catheter.


Exactly :) You would have no idea unless you were very close to that person. Exactly my point. This is what I think is the best possible solution for "Colin"


on 12/21/05 at 20:03:03, catlind wrote:
You can be damn sure when he enters middle school and high school he'll have nothing to do with it, and then may well bear resentment to his parents for leaving him in such a quandry.


My exact thoughts again. Exactly :(

Thanks Cat
Title: Re: What would you do if it was your child??
Post by Sean_C on Dec 21st, 2005, 8:23pm

on 12/21/05 at 20:04:27, Jonny wrote:
Hey Bro, now im pissed!

You tell the wife to put on a diaper and shit in it, then tell her to sit in it for an hour or two.

I dont know all the details, but your want for your son is  what needs to be done given the info you gave us.


She started on me this morning first thing with "I don't know what your problem is" if you can believe that????

I said my problem LOL, you put on a fuckin depend on and fill it with piss and sit on it for eight hours and then I'll tell you what my problem is. My problem :-/

She ain't talkin bro, she knows I'm through with that.

Its catheter or no school, the choice shouldn't be a choice :-/ and she knows its pissin me off  [smiley=huh.gif]

thanks bro ;)

Sean...........................
Title: Re: What would you do if it was your child??
Post by Sean_C on Dec 21st, 2005, 8:33pm

on 12/21/05 at 20:03:03, catlind wrote:
I'm at a loss as to why your wife would be willing to risk Colins life with experimental surgeries, and then be unwilling to risk a relatively simple solution as an alternative to the child having to spend his life in diapers.


Colins Urologist doesn't want to cathederize, he want to do more surgery's. "He's" hopeful something will come along in the future that will benefit Colin.

My response to my wife was "he's using him as a guinipig can't you see that" all I got was more silence :(
Title: Re: What would you do if it was your child??
Post by alienspacebabe on Dec 21st, 2005, 8:50pm
I honestly don't know what I'd do right now. Probably wait and see.... and if, when he's ready for school, there are no other treatments, then do the catheter surgery. If someone is capable of not using a diaper, then he/she shouldn't have to use one.
Title: Re: What would you do if it was your child??
Post by Grandma_Sweet_Boy on Dec 21st, 2005, 8:55pm
Check your P.M.'s my son!

Maa
Title: Re: What would you do if it was your child??
Post by pattik on Dec 21st, 2005, 9:00pm
I guess I'm not understanding why catheterization is so final sounding.  Your son is very young, and with all the years ahead of him, there could very well be great advances in surgery for him--especially when he is old enough to make his own health decisions.  For the time being, I would give him the best solution available (which sounds like catheterization)which will give him the most normal life possible.  Being "normal" is pretty important to young kids.
Just do what feels right, Sean.   [smiley=hug.gif] Pat
Title: Re: What would you do if it was your child??
Post by cootie on Dec 21st, 2005, 9:02pm
Can you give it more time......kinda think about it when cooled off on both sides ? A bag deal thing  may be an issue too (both options have issues is what I mean) with sports and all for a boy......and hopefully not gettin anyone to pick on him not knowing about it and find out the hard way with a fight. (you know how boys are).....sports is a boy thing......so he'd need to have a good answer why he could not participate. Kids can be cruel and either way he probly won't be able to do alot of the normal stuff a boy wants to do. All I am saying is that he faces ALOT of challenges EITHER way.....a diaper would be GAWD AWEFUL......he'd become a recluse and I wouldn't blame him one bit. But people have to deal with that problem too with NO choices to change. But to carry extras on you as a boy would be VERY difficult and I think he'd need to go to a private school or home school'd. A boy in public school with a diaper esp after 1st or 2nd grade is goin to be so humiliated.....esp if it gets soppy and he has to change it. Either way it is a shame he has to go thru this and NOW you two are sumwhat payin a price. You mite need a mediator in this one to get the conversation moveing again and weigh options from an unbiased side. No one will feel as guilty.........long road ahead Pam  
Title: Re: What would you do if it was your child??
Post by catlind on Dec 21st, 2005, 9:47pm
Sean, the future may well hold a surgical solution to this.  Is it necessary to do the belly button catheter?  Can't he be taught to do a regular catheter like Jennifer did until the time comes for him to go to school and/or reaches the end of 1st/beginning of 2nd grade?

You still have a year and a half, that isn't alot of time, but it is still time.  The new pull ups they have now would suffice him through kindergarten for sure, my ex-nephew had a potty training problem, and he used the pull ups through kindergarten without any serious emotional problems.  

Perhaps the solution is in a compromise.  Pull ups for kindergarten to allow maximum time for a possible medical/surgical solution that has had some successes behind it, and if none are available, then talk to him about learning a regular catheter or going the belly button route.  Maybe waiting until the end of kindergarten and then teaching him regular catheterization would work and give you a few years to wait on some more successful and concrete options for a proper repair.  

I don't know if any of the above is at all possible, just a thought.  

I do agree with you about the surgeries right now though, I think the child has been through enough by the sounds of it, and subjecting him to yet another experimental surgery could be just as damaging with all the hopes and disappointments that could come from it, as they truly do sense and understand those emotions from their parents even if they aren't capable of voicing what they know.

There is middle ground here for both of you, you both just have to look deep to find it.  I mean no disrespect for either of you, as I said in my previous post, I simply cannot fathom what you must be going through and what you have gone through.

Maybe all you need right now is to agree to let it sit for a few months and then revisit the situation as he gets closer to school.  MANY children start kindergarten with pull ups....Ayden (my youngest) started kindergarten this year, and he came home the very first day telling me "how come I have to wear underpants, other kids don't have to!"  We bought him some star wars undies to get him thinking it was cool, but certainly children in the first 6 months of kindergarten are not at all unusual still needing/wanting pull ups.

Hope it gives you some ideas and some other aspects to think on.

*hugs* for you Sean, this must be terribly difficult.  You have my number still, use it if you need it.

Cat
Title: Re: What would you do if it was your child??
Post by vig on Dec 21st, 2005, 9:48pm
I'm with Patti on this one....
things could change drastically in 5 years.
buy him some time....

sorry bro...
:'(
Title: Re: What would you do if it was your child??
Post by Cerberus on Dec 21st, 2005, 9:49pm
I commend you to have the mental and emotional fortitude to bring this public. I don't know that I would venture that.

 Assuming that the facts are exactly as you stated and they are just the facts. I can only offer this...

Coots... was correct, EITHER way its gonna be challenging for all of you.

Cat was dead on in pretty much everything she said.

Jonny was also right (in MY opinion) although he was a bit forward... I expect nothing less from him, nor do I suspect do you.

 As a Parent...but PRIMARILY as a man, it is in my opinion that the Doctor is looking for a way to get famous by being the "first" to do something. And no matter what anyone else says... IT IS ALL IMPORTANT THAT YOUR SON BE AFFORDED AS MUCH SELF ESTEEM AS POSSIBLE!
 I have worked with physically disable children both as an adult and as a teen and one thing I know for certain... it is WAAAAAAAAY more difficult to dismiss emotional torture than it is a physical disability. I also work in a school now, and I get to see all kinds of crazy stuff most parents have NO idea what their kids say and do while not home.... trust me, the teasing he would recieve (albeit PRIOR) to anyone having learned WHY he had to wear it, would damage him beyond repair. The Catheter can be dealt with on many levels, but the diaper stigma is permanant.

Catheterize... without question nor hesitation.

'Bus
Modified to add:
I agree that there is still plenty of time to decide, however, if medicine is going to advance THAT much in five years then it would have advanced faster in that short time than it has in 10,000.
Title: Re: What would you do if it was your child??
Post by Cathi04 on Dec 21st, 2005, 10:18pm
Sean!
What a miracle this child is! Bless his heart, he's been through more than most of us already.
Catlind's words are dead-bang on...and Jonny's too! Some time might mellow your wife, and give you the ability to discuss this at length, openly and with eyes focused on your son's best interest.
Fortunately, pullups will buy you that time.........and give Clusterville time to conjure up a miracle!

Sean, sending you a huge cyber hug, wishing it could be the real thing, coz I'll bet you could use one right now.

Hang tough, vent any time!!

Cathi
Title: Re: What would you do if it was your child??
Post by E-Double on Dec 21st, 2005, 11:01pm

on 12/21/05 at 21:48:06, vig wrote:
I'm with Patti on this one....
things could change drastically in 5 years.
buy him some time....

sorry bro...
:'(


Me too my friend!!!

I  do not have children (yet) but I do know children!!!
I would want my child to have the most functional lifestyle with the least chance of stigma being attached to him.
He is young and can learn very quickly how to adapt.

If mine I would choose a cathader in lieu of a diaper.

It's a hard decision.

Here for ya.

E
Title: Re: What would you do if it was your child??
Post by nancyc on Dec 22nd, 2005, 1:24am
Oh, bro, this is a rough decison to have to be making especially during the holdiay season....My heart goes out to you and your family.  I think it is awesome that you came to your family here for advise.  I am pretty much like everyone else, I tend to side with you on this one.  I can remember how important it was to me as a child to fit in. .Being a nurse, I can tell you that everyday something new comes out in the medical field.  Maybe this is something you should remind your wife of.  At any rate, this is a really tough situation.  I pray that you and your wife will come to some common ground regarding this.  It is so important that your son sees that his mom and dad are working together for his good..   Sometimes this is hard to do when you are under so much stress . I pray God will help you both come together for your child's sake....May God bless you and yours in whatever you decide to do.  You will be in my prayers. Smiles,nancyc
Title: Re: What would you do if it was your child??
Post by Woobie on Dec 22nd, 2005, 7:25am
WOW -
Sean - my heart is with you and your wife, for even having to MAKE this decision.


I would - as a parent - do the surgery.  There's no way in hell I would put my kid through the teasing and humiliation.
in time - it will be second nature to him - it wont be painful for all his life - just in the beginning - right?
- it will be all he knows, and easy for him to handle.  And no one would even KNOW he has one unless he tell them.

With a diaper - everyone would see... and kids are cruel.  He's going to feel different anyway - and if kids tease him on top of that - he wont have a shot.  Know what i mean?

I cant even imagine what you're going thru Sean..... you and your wife gotta stick together.......... you've done it this far... you gotta keep talkin.

Maybe if you printed this thread out and let her see it - she would understand more reasons... from other people = and she could listen that way instead of just shutting you out when you bring it up.

What he would go thru and what he can do later about anything you decide now.   Like - if he gets cathederized now - can it be undone later?  

If he does the diaper thing, can that be fixed some point down the road?   And what if it cant?  Will he be in a diaper all his life?   Is that what YOU would want?  

Dont worry about the doctor - he'll make his money - but it doesn't necessarily have to be with your kid.

Oh man - my heart is with yoU! [smiley=hug.gif]  For your wife too - she must be agonizing over this too.   I hope you two can talk this out and get everything worked out - TOGETHER.  

I'm rambling...................
Keep your chin up!
tina :-*
Title: Re: What would you do if it was your child??
Post by JenniferD on Dec 22nd, 2005, 8:10am
Sean I am so sorry that you and your wife have to face such a difficult decision.

I remember waayyyy too well all the teasing my kids went thru just because kids are cruel. I think in a lot of ways neither of them got over it (especially Hannah).

I agree with buying some time- for RESEARCH, not experiments, and time for the two of you to let the emotional side cool down and talk rationally about it.
On that note: I agree 1000% that the catheter is the way to go. No freakin way would I give other kids a reason to tease or be cruel. I made the mistake of letting my kids "just deal with it" on some of the teasing, thinking that would make them stronger. All I caused was their heartache, and they will never forgive me for it :(
Hugs to you and your wife and Colin,
Jen
Title: Re: What would you do if it was your child??
Post by BarbaraD on Dec 22nd, 2005, 8:13am
Cat is right on on this one. The pull ups are great for now. Give him a couple of years. He's had enough trauma for now with all the surgeries. If nothing comes up that will correct the problem between now and a couple of years from now, then do the catherization.

At 3 1/2 he's really not ready to learn to "potty" too much yet anyhow. Let him go ahead and use the "big boys" pull ups.

You are right - kids can be so cruel and if there's a way to keep him from going thru the cruelty - then I'm on your side in this.

One piece of "Granny" advice (and advice is good - you can take it or leave it) - Don't argue in "front" of Colin. Kids at this age pick up on a lot more than you realize. Just let him know you love him more than anything in the world and no matter what will always love him.

Hugs,

BD
Title: Re: What would you do if it was your child??
Post by karma on Dec 22nd, 2005, 9:08am
Sean,
Whats the rush to make a decision? At 3 1/2 theres still lots of time.

A mothers baby will always be her baby no matter how old they are.
A father will want his child to be a man before his time.

There is a middle ground somewhere there that will allow a decison to be made that is best for the child.
Title: Re: What would you do if it was your child??
Post by Karla on Dec 22nd, 2005, 10:01am
My 10 year old neuphew wears pull ups to school and changes them as needed.  He is accepted by the kids at school just fine.  Just thought I would mention that.  What the future holds for him who knows?  Personally I think I would do it the way you are thinking just to give him as much of a normal life as possible.  With my nephew it is phycological so there is no fixing to him.  I willl be praying for your family and that you and your wife can reach an agreement.  
Title: Re: What would you do if it was your child??
Post by nani on Dec 22nd, 2005, 10:23am
Karla, the old school thinking on those issues is that they're psychological. It's more likely a sensory processing disorder. There are meds for it, too. Have his parents ask their dr about a nasal spray for bedwetters. An evaluation by an Occupational Therapist may help, also. I'm going to PM this to you, also...just in case you don't come back to this thread.

Sean... I'm so sorry you and Barb are having to deal with this.  :'(  You've gotten some great advice and input here. I'm with the majority.
1. You have some time to make a final decision.
2. Experimental surgery can be traumatic (and sometimes even dangerous), new things are discovered all the time.
3. A cath is much less likely to cause him any emotional trauma once he's in school.
4. Try to discuss this with Barb when he's asleep or not around. Kids pick up on things more than you'll ever know.

I'll be sending prayers and good thoughts to you guys.
Much love to you, honey... hugs, nani
Title: Re: What would you do if it was your child??
Post by rickyshot on Dec 22nd, 2005, 10:29am
What a tought situation. At first I thought WTF at your wifes' comments. But we all deal with stress in different manners. I am sure she is afraid of surgery for her baby. 30 years ago I worked in a rehab place in Grand Rapids , Michigan called Mary Free Bed Hospital on Wealthy street. They are still there. They are one of the best in the country for this sort of thing. Call em up and get the latest developements on bladder programs for a child as yours. I remember kids with spinal bifida and paralyed children and children with cerebral palsy who used straight catheters every two hours to go to the bathroom. The program was amazing and worked for a high number of patients. I can only imagine the advances in this sort of thing. Even an indwelling foley catheter is better than diapers and sitting in dirty diapers. Information is the key. Your wife sounds like she is panicking and she needs information. Try not to emotionally argue with her and feed the fire. Y'all will get nowhere and this is about your son not y'all directly.
I am praying for y'all.
Title: Re: What would you do if it was your child??
Post by Ree on Dec 22nd, 2005, 1:44pm
Hi Sean....  Gods love to you buddy... Life is hard... Well I wanted you to also know that using a catherder isn't as difficult as you would think... One of my daycare moms has MS and cannot urinate normally and has to use the Cath every time she has to go... Once he is taught its safe and easy.....actually its very clean also.. Love to you bud... Ree


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