Sorry the updates have been lacking

It's been a crazy week here. Last Wednesday, the insurance company decided that they did not want to pay for Connor's hospital stay anymore. So we have been fighting that. In the meantime, we have been sanitizing our home as much as possible. We are currently still at the hospital while the appeals are going through.
Yesterday, Connor decided to take a turn for the worse. He woke up at about 8, and was a bit fussy. I noticed that he cried when he pooped, and his stool was pasty. Things went down hill from there. His heart rate skyrocketed above 220, his temp slowly started to rise, his respitory rate went up to about 140, and his oxygen level dipped to the 70s. They stopped his feeds, put him back on oxygen, and started IV nutrition. They also drew a ton of labs and cultures from his stool and urine. We are still waiting for the results. Today, after I went home, he started to settle back down and is now looking much better. He is back off of the oxygen, and no fevers since I left at 1. Tomorrow, I will be contacting the Michigan Department of Community Health, Senator Levin, and Governor Snider to try and get answers as to why it is taking medicaid so long to approve this surgery. I am tired of being told that the doctors are handling it. I know that they have protocols, but I am his mother. I need to do something other than watch my poor baby die in a hospital bed before he even has a chance to live. I will try and update again soon.

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Amanda HurleyFlat Rock, Michigan
03/14/14
Amanda Hurley
we are on Medicaid. They are taking their sweet time.
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    03/14/14
    Amanda I'm so happy to see Connor's pictures - he is awesome and looks very smart and strong!
    But your post almost made me cry...
    Amanda, you are so strong, I even cant imagine how hard this all is... I'm sure you and Connor deserve to be the most happy mom and son in the world! Good times will come, be sure.
    I'll pray for your family
    3
      03/14/14
      4Katie
      Hi Amanda, I am sorry to hear that he is having a hard time again. I hope that the insurance stuff can get figured out soon. His photos remind me so much of my daughter when she was in the hospital, she had a feeding tube and central line too. If you ever need to talk I am here. Have you looked into medicaid waiver program, it has a different name in each state? Medicaid waiver pays for things that medicaid normally doesn't and a child can get it based on their disability and not on your family income. My daughter got medicaid waiver after years of us trying and it has been a true miracle. If you need any help trying to get this program please let me know.
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      03/14/14
      Amanda Hurley
      he is on childrens special helath plan. thats basically what you are talking about. they are also helping with some of the stuff.
      1
        03/14/14
        8Theresa Gould
        Will be praying for you and for Connor. Hugs!
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        About Amanda Hurley
        Current: Flat Rock, Michigan
        Birth: October 04
        On Moms.com since: Sep 20, 2013
        I am a 28 year old SAHM of four children. Mr. Connor is my son. I am looking for some additional help for a permanent grave marker. If you would like to help with expenses or would like to send a card, please inbox me for an address and details. Thank you