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Little Collin's 2-1-2012 Update.
February 1, 2012 by Grace
Comments (1)
From Caring Bridge.
Written by Lisa McDaniel
The last 3 weeks have been a tremendous battle for Collin. There have been several times when we thought it was the end of the battle for him, but he is still here with us. It has been heartbreaking to watch him struggle for breath at times. He has times where he has very long pauses between breaths, times where his heart rate has been in the 30s or up over 100, times where his blood pressure has been extremely high. Through it all, Collin is still fighting to be with us. His body is very tired & worn. His body is slowly shutting down. He mostly sleeps now & we just try to keep him comfortable with meds. He is our Super Hero. The hospice nurses are here everyday. We have wonderful nurses & they already feel like part of our family. The whole staff at New Beacon has been very kind & caring. We appreciate them all so much and for their care of Collin & our family.
We will be getting more bracelets soon with a new Super Hero logo on them, so look for those very soon!
Our friends have graciously put together a Fundraiser/Sing/Supper for our family. It will be Saturday, Feb. 25 at Choccolocco Community Church. Spaghetti Supper will start at 5, singing at 6. Groups singing are: Clearvision, Crystal River & Hope's Journey. For more information, call Metha Dover 256-605-1033 or for information including donation information:
https:/
Thank you so much for checking in on us. Please continue to keep us in your prayers as we continue to walk this path. Pray for peace for Collin and for his pain & suffering to end.
A Rare Approach to a Rare Disease
Cherie
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I've never seen a comment from the McDaniels on whether or not they thought Collin's outcome would have been different had their insurance company not denied to pay for Collin's NMO meds in the beginning. But after reading Collin's site on Caring Bridge I'm really angry about what could have been. Doctors fought for over 4 months to finally get the insurance to approve Collin's meds, but in the meantime the doctors could only treat Collin with steroids to help keep the symptoms at bay - but he had nothing effective to stem the autoimmune attack on his brain, brain stem, spine, and optics. When I think about it, the anger wells up in me...why would an insurance company - no, how dare the insurance companies- deny life-saving treatment for a child???? When did the insurance companies become more knowledgeable than our doctors regarding what treatments we should or should not receive?! My mind just says "What the...!!!" And why do we tolerate it time and time again? Sorry...just venting. Sometimes helps. But really...our nation needs to do something about the power the insurance companies hold over our health care system. Really. In the meantime, my heart breaks for the McDaniels and I continue to pray for Collin's peace and his family's strength and comfort.
Cherie 106 days ago