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939RE: [Parenting Children with Moyamoya] My daughter's EDAS yesterday

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  • lora beasley
    Jan 17, 2008
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      Meadow has moved out of ICU to a regular floor this evening. She is doing really well, and even seems playful today. She had her CVL removed this morning. There is even talk that if she continues doing well, she may be out in a day or 2. Yay! She seems so much happier since we have come to the regular floor....more freedom, less wires and tubes mangled all around her.
      I feel much better today as well.
      Lora



      To: parentingchildrenwithmoyamoya@yahoogroups.comFrom: sparkln13@...: Thu, 17 Jan 2008 13:34:46 -0800Subject: Re: [Parenting Children with Moyamoya] My daughter's EDAS yesterday




      Lora,How is Meadow doing? Just know that we have all been through the same heartache and that you are not alone. And feel free to pour your heart out any time it needs it! I was pretty strong during Samantha's hospital stay. My emotional breakdowns occurred (and still do) on days like teacher appreciation day when I thank the school nurse for her help and attentiveness to Samantha's migraines. A commercial on tv or movie can trigger an emotional reaction out of the blue as well. Keep us posted when you can. Our thoughts and prayers are with you. LaurieP.S. Make sure you get some sleep. Everything looks 10 times worse than it really is when you're overtired.Lora <lorabeas@...> wrote:Hi everyone, I am new to the group. I was referred by another MMD parent. My daughter, Meadow, is currently in ICU at Lucile Packard Children's (at Stanford). Dr. Steiberg did her second operation yesterday (left). She had her first EDAS last Tuesday the 8th. I was told that she will remain in ICU again tonight, because some of her lab work was abnormal. My daughter also has panhypopituitarism, which makes things a little more complicated. Her sodiums have flucuated, and she has some increased urine output. Also her hematocrit is a little low. Her blood pressures are better today, and she is off the IV drip (that keeps it stable.) I hope that everything will stabilize soon. She can't have any foods/liquids until her MRI today. I have been patiently waiting, but almost had a meltdown. I have held up so well...but I think I may have held everything in too long. My mom went back with Meadow to give me a relief. Writing to you all is my relief! I guess getting everything off my chest is relieving. Meadow just looks so pale. It makes my heart ache.Well, I guess I have just poured my heart out! I look forward to meeting others here, it is a scary thing to go through for any one. My little Meadow is so strong, she amazes me. Take care, Lora---------------------------------Never miss a thing. Make Yahoo your homepage.[Non-text portions of this message have been removed]






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