Tales of the Toot

'Cuz special needs kids need special mamas!

Revolving Doors January 9, 2009

Filed under: AHUS,Atypical HUS,kidney failure in children — christycross77 @ 10:19 pm


..yep, that’s what we feel like the hospital(s) are right now…just a revolving door for us. I haven’t updated in a while because we’ve been on the go between hospitals so much. We spent last weekend in the local hospital because poor toot got a stomach bug and couldn’t keep anything down. The dialysis pulls a certain amount of fluid whether there is any extra or not, so we were afraid of dehydration during dialysis without IV fluids. We literally checked out of the local hospital Monday at 9:30 a.m. went home to pack and were on the road by 11:30 headed to the hospital in Dallas where we were for pheresis until Wednesday. They have Aiden up to 2x per week on the pheresis now because his dr. didn’t feel like once a week was enough. Basically we check in on Monday evening for lab work, stay the night and have pheresis Tuesday morning stay another night, have pheresis Wednesday morning and then are released and come home. I am so thankful for great friends supporting me through this and a few awesome family members. (THANKS JEN FOR NOT LETTING ME GO TO THE HOSPITAL ALONE THIS WEEK!!)

I’m unsure if the pheresis at 2x per week is changing anything or not. Basically because I don’t feel like Aiden’s lab work is being followed closely enough to know if there is a real difference. I am starting to think it’s not a bad idea to seek a second opinion as far as treatment options are concerned. Aiden’s Dr. is great, but it never hurts to have another brain to pick, especially with something that so little is known about.

Aiden’s spirits are great and he is running around playing right now. He really is awesome. The only thing that really got him down was the stomach bug…poor baby felt so bad.

Still no results from Iowa…looks like they weren’t kidding when they said three months…halfway there.

Great news to report! Aiden’s Cross is a go!!! Deborah Harter, owner of Sterling Grace Jewelry is already working on the design. She is so very sweet and supportive of this idea and of the idea of increasing awareness of AHUS. She is truly awesome and I am honored to be able to work with her on this and so very happy that she has agree to do it! Thanks so much to you ALL for writing in and showing support for Aiden. I will keep you updated on the progress of Aiden’s Cross!! 🙂

I will of course update on any news or changes of Aiden and plan on getting some recent pics up as soon as I have a spare minute.

Love y’all,

Christy, David and Aiden

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3 Responses to “Revolving Doors”

  1. steph Says:

    just wanted to let you know that i am still praying for yall and think about yall all the time and I am praying for Aiden and I am also praying for you and David. I am praying that God will give yall the stregnth to carry on when you dont feel like you got it in you o even blink. Wish I could be there to give you a hug and go with you to the hospital and appts and stuff. if I wasnt 600 miles away I would be there in a minute!!! but always know that I am praying. love steph

  2. MelBedre Says:

    Stay strong!! I’m so sorry things aren’t better yet…Getting a second opinion sounds like a very smart idea. Still praying hard for Aiden, you and David!!!

  3. Anonymous Says:

    Just wanted to let you know that I think about Aiden all of the time. I wish that I could be there to help out! ((HUGS))Love, Jen (picesjen from IV)


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