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[Tysmom]

I just love the name of this site! It is comletely perfect for how I feel, uuuuuurrrrrrrgggggg. We led a normal life with a 12 yo and 3yo twins. In 99 my mom suddenly died (my main support) in March, I was devasted but had to take care of the kids and my Poppa. then in July suddenly our office manager walked out and my daughters check bounced, we were several thousand dollars overdrawn and I found myself thrust back into fulltime work.

We never ate out before this but between alll the responsibilities we went out to eat at a restaurant we had eaten at before and by the next night my twins were ill. They went downhill fast with the dr saying it was a virus and he was dismissing them from the hospital as they had seen bloody diarhea and bloody vomit all week. The nurse handed him the latest bloodwork while I got ready to go when the nurses rushed in and he, my 3yo son was transferred to another hospital over an hour away. I could stay there as they weren't dismissing my daughter or I could selfdismiss her and go to the hospital with my son. Of course we selfdismissed her my husband took her to the ER my son was at to get checked out at which time we were finally told my son was in complete renal failure.

Now I am no longer a naive mother instead the mother from hell as I fight for my sons rights. He transplanted in 11/2006, cancer 3/2007, and complete renal failure July of this year. He is on CCPD which is supposed to be so great but he iis going downhill so fast. They are still messing with what is the best type n time of dialysis for him but if you ask me they just aren't trying hard enough. NONE of his workers gets a star from me, Tyler's Mom!

[Rerun]

Hi Tysmom and welcome to IHD.  So did they ever say what happened to the twins in the first place?  Food poisoning?  And how is the other one?  Sounds like the "Best Health Care In the World"    Has failed you.  I hope they can get Ty settled into a good routine (if there is ever a good)  Come here to vent and to maybe get some answers. 

Rerun, Moderator    

[Tysmom]

Sorry I was vague while trying to be brief, my children both developed HUS from E-coli 017h7 better known as the Jack in the Box disease or hamburger disease. Ta has done much better than Ty but left with quite a bit of intestinal damage and problems, The biggies we have to watch are puberty (which is now hand me a hammer for me head) and pregnancy which can compromise and cause her kidneys to fail. It's not just kidneys that affected with HUS, Puberty is a big reason for Ty's failure as multiple organs began to have problems all of a sudden as they gave him growth hormones as he was still the size he was at 3 when he was 12. The Gary Colman syndrome and boy those shots worked overnight and that is not exagerating!

Thank you for the welcome! Sorry to be vague I lost my brain!
TynTa's Mom

[looneytunes]

Hello Tysmom and welcome to IHD      It sure sounds like you have been through the wars.  I also have taken care of a special needs child and it isn't an easy thing to do.   I hope you come back and post often.  I'll be thinking of your kiddos and sending lots of good wishes your way. 

[Poppylicious]

  Tysmom!  I hope they get Ty's dialysis sorted out soon.  Come and grumble here often!

 

[cariad]

I'm sorry to read how much heartbreak you've been through, but glad that you've finally found us! 

I was a dialysis child once. Have you seen Food, Inc? It is a difficult film to watch, and one of the featured stories was a woman who lost her son to E. Coli after his kidneys failed. So sad - I'm glad your children are still with you and fighting on.

[Tysmom]

Thank you everyone for the welcomes and info! I LOVE info. I will look for the movie as I am finally past the e-coli fear and even got to go to Seattle for food poisoning convention and met several parents some who lost their loved ones, and others that survived, I find I need to learn how they stay strong and that it could always be worse! I need to be reminded of this sometimes minute by minute. I am thankful my twins are here, I just wish I could find a way to make both of their lives easier, they both suffer because of all that's going on and after transplant we thought we would have a breathing space. I guess two months was a break at least before the cancer. Taler excels at sports which we go to as much as we can to support her and he is just a lover and volunteers in nursing homes and hospitals! Need a picture enhanced or fixed, he will give it his best shot! Thanks again, I'm balling again like a little baby! Best days to all!

[Jean]

Boy you have really been thru the wars, I feel so badly for you. But, I wish you peace, patience and some thing going right and of course,     you to IHD.

[aharris2]

You take your kids out for a burger and the next thing you know, your lives are changed forever - unimaginable!

I am sorry you have a reason for being here, but welcome to the neighborhood!


  

[rsudock]

I just can't understand why children have to suffer like this...I too, like many on this site, was a child born with a genetic problem that caused my kidneys to shut down. My first year ever of dialysis. I can identify with how your kiddos feel...post anytime if you need advice, shoulders to cry on, or just to rant! We are here...WELCOME!

xo,
R