Jen

For my oldest DD. It is set up for March 24th at Mayo in Rochester, MN. We have to be there the 23rd to talk with her ped. urologist and nephrologist and they are playing to do an u/s and just go over everything and her for the next day.

I am so upset and feel just sick. My anxiety is at an all time high. How can I go through all this again?

For those of you that don't know she has a duplicating right kidney system. 2 right kidneys that are combined together with just a wall inbetween them and the two together are the same size as 1 normal kidney. Double uretur tubes that lead down to the bladder. She had surgery to make her uretur tubes from ll shaped to more of a y due to urine backing up into the kidneys causing renal scaring (kidney damage) due to frequent kidney infections. From that she had problems that landed her an emergency surgery 4 days later that we almost lost her during. We spent a total of 6 weeks in the hospital in the PICU and Childrens wards of the hospital. Then she has had 3 other kidney / bladder surgeries and awful awful tests. Not to mention 1 surgery for ear tubes and adnoids and then another for her tonsiles. One good thing is that we had been transfered from Childrens Hospital in Omaha, NE to Mayo and Mayo is just awsome and have helped so much.

Poor thing is getting kidney infections again every 4 - 5 weeks that lead to a 3-7 day hospital stay. We have BTDT in the past but now there is some hope that they can fix or find what ever is going on now.

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Masonsmommy

Poor baby! What an awful thing to have to go through.

Good luck w/ the surgery and let us know how it goes.

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Me-26
Dh-30


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8/24/2004


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sophiasmommy

i hope her surgery goes well. poor girl! she's had quite a lot to deal with for a little person!

i'm glad you are going to mayo, i've heard so many good things about their hospital!

DKGirl

What a lot for a little girl to go through. I hope things turn out to be good. I agree like the pp, I've heard good things about the Mayo Clinic.

Hang in there....

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Terri

Poor Alexis!! Give her big HUGS from all of us!!

I'm so sorry she's having to go through all this pain and surgeries at such a young age. I've had cronic UTI's since I was 10, which lead to kidney infections, so I know first hand how painful it can be.

Continue to stay strong for your little girl. I'm glad she'll be in good hands at the Mayo Clinic!

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Emma

Poor little thing. That's really tough for a child to deal with. Things sound like they might get better after this though. We'll keep ya'll in our prayers. I know it's a little time off yet, but let us know how she's doing.

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Jen

Thank you everyone. I will be sure to keep you all posted.

My little sisters are 15 & 13 and cherish my kids. They are SUCH wonderful aunts and will be making the trip to MN with us. They will watch Ethan and Olivia while we are with Lex during her surgery. I can not leave my kids at home and they approached me with this. Such great girls! I got a 2 bedroom suite at a hotel near by that has an AWSOME pool and rec area so the kids are excited. Since there are 7 of us we NEED room and a fridge etc.

Yes Mayo is WONDERFUL. We went no where at Childrens in Omaha. The doctor had his mind made up before he walked into the room. Actually the meds he put her on made her problems WORSE intead of better. Thankfully she wasn't on them long b/c her doctors here at home sent us to Mayo 2 months after that. Her ped and urologist here are great but there is so much they can do and know. I have a lot of respect for doctors that tell me that they don't know and help us find were we need to go. Lexies doctors at Mayo have kept in touch with us very well over the past 3 years we have been going. I can't say enough how wonderful the staff, nurses, and doctors there are. Very patient friendly and awsome with children.

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jillian1527

I am happy to hear she will be at Mayo. I know they are the best. I will be praying for her to have a quick recovery. Poor little Doll. No child should have to go through such things.
((hugs for you mom))

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Todash

Im sorry you are having to deal w/ all that. I'm send prayers for you and your family.

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belinda