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Total Entries: 34
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  • Back to the hospital

    Written Jan 6, 2012 6:45pm

    Wanted to quickly let everyone know we are headed to Peyton Manning hospital right now. Ian isn't getting better and we need to get this figured out before he gets any worse. 

    I will try to update later when I know something. 
  • The Ugly

    Written Jan 5, 2012 7:16pm

    The Ugly


    Ian’s stay in the hospital - We have always been told that Ian will dehydrate very quickly. Part of his kidney disease is Polyuria which basically means he expels all the fluid that goes in him as quickly as possible. No matter what nutrients, good or bad, that it takes with it. So once Ian expels all the fluid he has there is barely anything to fall back on. Saturday morning we were going through our wake up routine…Start laundry, change Ian’s diaper, take Dill to the bathroom, and get Ian a sippy ASAP! This was about 7:45am. Once I gave Ian his sippy Lily tells me Ian’s favorite blanky has something on it. I look at Ian and he well…explodes? It was icky, and the blanky was icky. I start cleaning in high speed mode because James is sick and can’t help…it went on for a bit. By the end Ian looked wiped out. I called the pediatrician’s office around 9am had an appointment for 10:15. By that point Ian looked very pitiful. The skin of his lips were peeling off, he was pale and barely moved or fussed. The Dr. decided Ian should head for the hospital and receive some IV fluids. Once we were settled at the hospital a few visitors came by. They commented on how Ian would only move his head from one side to the other, he wouldn’t sit up or make any noises. Honestly I temporarily forgot he could walk, because he didn't for over 3 days. He was just miserable. In a matter of 4 hours Ian was in the kind of shape a normal child would be in after 2-4 days of this. As many of you know he stayed at the hospital Saturday Dec 31st –Monday Jan 2nd receiving IV fluids and keeping the nurses on their toes with new outfits and linens. Once Ian came home he was a mess. His lips were already starting to peel again and his demeanor was fowl. Many of you saw the Youtube video of him eating the washcloth in the bathtub…it was the only way we could keep him from crying. Everyone was thankful for bedtime. Today is Tuesday…he is doing much better. We are still washing blankets and towels like crazy but Ian is happy and playing with his sister and brother like nothing ever happened. Kids are resilient like that! Here’s to hoping his kidneys are just as resilient. We are still waiting on some of Ian’s main kidney numbers to return back to his normal. But even if they stay where they are now we only lost a little bit of kidney function. (Update - It has taken me a long time to get this post up! Today is Thursday and we are headed back to the Dr. Ian just can't get better and is starting to expel more fluids than he can keep in. His Nephrologist said to head to the pediatrician's office today.)


    And that people is The Ugly…it has been a rough week, everyone who touched both Dill and Ian became sick within that same time frame. So that didn’t help (Sorry everyone. ) But honestly I see this as a great learning experience for our family. After 16 months we now know all the warning signs to watch for and we know how quickly Ian needs to get medical attention. I hope this helps us avoid any future injury to his kidney’s from simple illnesses. 

  • The Bad

    Written Jan 5, 2012 6:59pm

    I can't get Ian an appointment until 5:15 because there is no one to watch Dillion, so I have time for this post!

    The Bad 

    It is not so much bad, as I just hate that we have to go! So I will keep this one short :) 

    Dillion is scheduled to go to St. Louis Shriner's hospital March 19th. Originally his endocrinologist wanted him to go in the summer, but Shriner's wants him asap. We put them off until March hoping our tax return will be back by then!

    So the plan is my mother in law Sherry and I will head down the Sunday beforehand with both Ian and Dillion. They are hoping to do a family study and figure out once and for all if Ian has X-linked hypophosphatemic rickets like Dillion or not. Dill and I will stay Mon-Fri in the hospital having a variety of tests ran on Dill (maybe me too). Hopefully by the end of it they can make some small changes to his meds and keep his legs from getting worse before next January. 

    Should be an exciting (long) week! 

    Stay tuned for "The Ugly"

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Healthcare Facility

St. Vincent Hospitals and Health Services
2001 West 86th Street
Indianapolis, IN 46260-1991
United States