I probably shouldnt write an update right now, but it wb the only chance I get. Ellie is in the OR right now. I wish I had half her strength. Last night was a nightmare. Im sure she will remember it as the worst night in her 12 years. I warned the nurse for hours that she has had a lifetime of tricky veins and that drawing blood and certainly putting the IV in wb very difficult. Wed already had two fails over the last 4 days. Sure enough, after 4 mins of pushing into her already sore wrists vein, we had a fail. Ellie was in agony and in full panic mode. An IV specialist team from the ICU was called. I had some hope. They tried her left hand. I held her down for 5 mins through her screams until they sighed No. After two hours of near convulsive shaking, Ellie passed out. The team said they would be back in an hour with laughing gas and try her foot. We woke her up when they arrived. The gas mask frightened her, so they just went in. Four of us held her down for at least five mins. Her screams woke the whole floor and will haunt me for years to come. Her tiny limbs are already so damaged. I think she felt/feels betrayed by me. I got up early this morning and went down to the good earth. I was behind her surgeon in line. I told him about last night. He said that he actually found her veins troubling yesterday and that this might change the plan for todays surgery. Theyd only planned to remove deep tissue from her arms, legs and feet. But now he thinks they should remove pieces of veins? And pathology is now involved. He mentioned vasculitis, which 30 odd doctors ago our dear old family physician also suggested in July. We prepped her for surgery and took her down at 9am. I met with several new Drs who are now involved. I deeply wished Ellie wasnt privy to our conversations about removing veins, etc, and talk of fresh samples vs frozen while she laid there on the bed silent, stoic, but scared. God. I keep thinking about how tough this has been on her and all the times Ive gotten after her this year for a messy room, or adolescent moods. Shes so much sicker than we ever knew. So many regrets. So many. I dont have time to reply to all your notes. But I am so grateful for them all. For the record, this is not a diabetes issue. It may turn out to be somehow related, but we all believe this to be yet another wonky autoimmune disorder. Thanks for your support. I show Ellie all the notes. Days are long here and we both appreciate them. We are rarely in the room alone without some medical person though, so it is hard to respond. But we are grateful.
Posted on: Sun, 21 Sep 2014 16:21:00 +0000
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