Does anyone here have young children?

[kevinswife]

I was tucking my 10 year-old son in bed tonight.  He got tears in his eyes and told me that he is worried about his daddy.  Yesterday, my husband had to have his graft de-clotted for the second time in a month.  Also, we have made a couple of recent trips to the ER.  Once because his blood pressure and pulse were too low, and one because the dialysis nurse said he had an irregular heartbeat.  My huband had a kidney/pancreas transplant two years before our son was born.  His kidney transplant failed a few months ago and my husband is back on hemo dialysis.  I was trying to comfort our son.  I told him that his daddy got a really good report on his last set of labs, so he is doing well on dialysis.  I also told him that daddy is trying to get on a transplant list.  As a matter of fact, a transplant coordinator from our insurance company called today to discuss what hospital he will go to.  I was trying to be positive and hold myself together, so I wouldn't cry in front of my son.  It is sad that a child has to worry about a parent being sick.  I spoke to my son about organ donation.  I told him about a friend of a friend who recently had a liver transplant and is doing well.  We spoke about how one donor can help many people.  He wanted to know if anyone has ever had a brain transplant.  (LOL)

A couple of months ago, our son had a "Family Life" unit in school.  They learned a bit about reproduction.  My husband and I finally told him that we used sperm from an anonymous donor to have him.  We did this because we didn't want our child to inherit the health problems that run on my husband's side of the family.  Our son took the news quite well.  He actually seemed relieved! 

Do any of you have young children?   Any advice on what to say when they are sad or worried about a parent or other family member who is a renal patient?  I told him that he can talk to his dad and I any time about anything.  I wonder is there was something else I could have said to comfort him.  He said he felt a little better after we talked.  Then he fell asleep. 

[lola]

we have 3..........14,12,9. Otto has been on dialysis for almost 4 years now. I have found being honest with maybe a little fluff here and there is best. I have also used the child life people at the hospital when Otto's been really sick.

[amanda100wilson]

My son is 11 and  he hasnot really known me not being on dialysis as he was only 2 when my transplant failed.  I try tobe fairly honest with him, but when he gets worriedthat I might die, I just tell him that I plan to be around for as long as possible, and that seems to satisfy him.  I think that it is more important not to lie or promisetings that I have nocontrol over.

[Cordelia]

Yes. My son is 10 (going to be 11 next month) and my daughters are twins, aged 12. (will turn 13 in April)

My son was 9 when i went into renal failure. He was devastated by it all, even right down to seeing me with the neck line in when I was in the hospital. Very traumatic for him. He is Autistic, so you can imagine how he reacted...... Anyways......he fainted when he saw me in the hospital with the neck line in. Right from day 1 he didn't take it very well.  The sight of blood really bothered him too.

My twin daughters, two years older at the time, handled things much better and went with the flow, much different than my son.

You tell them what they need to know, your son seemed contented with your answers and I would say with his reply of him saying that he felt better after you talked, that was good. I did the same as you, I always reassured and told my kids if they had questions, to please ask, we would try to answer as best we could.

I rarely went into 'excruciating' details..mainly with my son. Generally, I told the basics and they seemed fine with that. For my son, with him being Autistic, I found I could only do that and he seemed satisfied with the basics without going into major details.

I found that giving too much detail, confused my son because of his Autism. My daughters could have handled it and at times, when I had a chance with my daughters alone, I could go into a little more detail with them, if I felt the need.

Anyways, that has been my experience.

[smcd23]

My son is 2 and he hasn't really started asking the hard questions yet. He sees SO's PD machine and we have told him it's Daddy's machine to help him feel better. But my son is pretty fascinated with it. The other morning he walked in, saw it, saw the light on next to the switch and said "Light off!" and turned the machine off. Then he said "Daddy play now!" and ran off. He knows that Daddy can't play when he's still on the machine. He has also asked me about the scars on my belly from when I donated, and I've told him a simplified version of the truth (Mommy gave Daddy a spare part to use).

As he gets older I plan on telling him the truth as he asks, and that he shouldn't worry because the doctors are smart and God has a plan. I also know that he did not inherit the genetic issue that caused SO's kidney failure (thank God!).

I think honesty is the best policy. Really, what else can you do? I don't want there to be any surprises, or have anything happen to SO that my son doesn't know about in advance.

[deniferfer]

My 3 year old cousin has grown up seeing me on the machine and she doesn't question it really. One time I had her in bed with me to sleep and she got so used to it when she went down foe nap the next day in my bed she pointed to it and asked for her nightlight. 

[lainiepop]

I have a 4 year old son and 10mth old daughter. Andrew has always known about my renal disease, he's always come to blood tests and appointments and er trips lol. When dialysis approached we talked about it openly and honestly with him and he asked questions and just accepted it, its what kids do, ive had this my whole like, u just do it's normal the younger you deal with it. Im not yet on dialysis as am having a transplant from my dad in 3 weeks 5 days Again andrew knows and understands (as well as he can). He sometimes expresses to daddy he's worried about mummy but tbh thats only if im having a bad time and let it show. Mum said she doesnt think he should come to hospital the first couple of days to see all the tubs on me etc but tbh i dont think it'll bother him, he told me he wanted to see all the tubes and drips lol. I had a c-section with elena and he took no notice of the drips and catheter draining into bags.
I don't know whether when drew's older he'll worry more as he'll think about it all more. As for lainie well hopefully she'll only remember me being well after the transplant.

[katieking1981]

I don't have any advise, but I'm finding comfort in learning that others have young children. I have an 8 year old from a previous marriage and 5 month old. I'm hoping that my boyfriend will have a transplant before our son is old enough to worry. Unfortunately it looks like we still have a 4-5 year wait for a kidney.

[MommyChick]

Kevinswife, Sounds like you handled it pretty well!
I have a 2 year old son, but hes to young to be asking me questions, although he does check out my fistula & I just tell him that's used to make mommy feel better & he just says OK, hehe

[gothiclovemonkey]

I have an 8 year old son. ( hes 8 but still really behind cognitively, physically, and mentally, by a few years)
My kidney failure was diagnosed the same year he was born, and i started d when he was only 3, so its been a good part of his life. he doesnt quite understand why i have to do this, or why i cant lift him up, why im always bruised and in and out of the hospital. he vaguely knows why, but i dont think he really comprehends it. but when he asks me anything, im always honest with him. i try to speak in words he can understand, and i ask him if he has questions, and do you understand what i mean? he usually nods and then goes back to asking about ninjas and superheros.
I make sure to have cuddle and reading time before bed, i give him that for comfort. he knows im sick a lot, and he does worry, but if i go into the hospital, i make sure to call wherever he is and assure him im alright. if possible he comes to see me, so he knows.
its part of our routine and has been since he was three, so i think that helps him a lot. hes just used to it.

[StarTomera1986]

I have a daughter that's 6 and a son that is 5. I have been in and out of the hospital so much that my daughter freaks out if I have to got to the E.R. for anything, because she's afraid I'll be in the hospital for a while. It really breaks my heart. I just try not to cry in front of her and I tell her that life is hard sometimes, but that I have to do what I need to in order to stay as well as I possibly can for my family.