Tuesday, September 1, 2015

Updated for those who know I love my brother with Down's Syndrome

Edited to add in an update at the bottom of the post

Lance, Mom and my Dad's sister

Twice I have written about my brother Lance on this blog.

on this post which begins by telling about the other post

My Brother is so Up about his Down's Syndrome

Lance and Our Grandmother's Brother
Once I was 12 years old and my Mom had a baby and my world changed. Prior to his birth we had never even heard of the children, called "mongoloid" at that time in our lives, so we thought his "condition" was a "tragedy" which would make his life painfully difficult. We already loved him enough to not be thinking about how it would change us, and we'd never have imagined the joy it has brought.

I wrote about Lance earlier in a post here

My family visiting just after Greg and I were married in 1984
But now I have to write that things are not going smoothly for my hero,  A couple years ago Lance and my Mom had to leave their home in Wyoming to move to Virginia to live with our other brother, Brett.  Brett is between Lance and I in age and has been amazing at stepping up to make a home when my Mom began to suffer from memory problems and confusion that kept her from doing necessary things like taking her diabetic blood sugar pills, or paying the phone bill.  At first the depth of her problems were camouflaged by how competent Lance is.  He kept her attending their daily and weekly routines,
 "Time for work, Mom."  
"It is Wednesday, we have Bingo tonight."
but the things Lance didn't know about, he couldn't remember for her.

So Lance and Mom now live 3,000 miles from me, and I don't see them much.  The fact of expense and time and work and kids have all given me excuses to think a phone call and letter and occasional package were all I could do at the moment.  Then yesterday afternoon I  got a call from Brett, and he was in tears, saying, "I'm not calling with good news." so I assumed it was Mom, and was stunned when he said, "it's Lance." I guess several people in Brett's house have been sick with the flu, so they thought that was what was going on with Lance, but out of the blue, getting ready for a shower, he collapsed and needed an ambulance and is now in Valley Medical, on IV and antibiotics and getting MRI and CAT scans and they do not know what is wrong, but the Dr. shook his head at Brett and said, "This is life threatening."

Lance driving to feed the animals on our brother's home ranch

a couple hours later Brett texted me: "they found a football size fluid in his abdomen. They still do not know what is wrong but that is what we do know. He is so sick."

Then I thought we were losing him. Brett sounded totally distraught in his next call, he said in the last hour he's gone really far down hill and there is internal bleeding, and fluid filling his abdomen and they are putting him on life support with a ventilation tube. Brett has been told he can only stay in the room with him until 10 PM eastern time and then has to move out to waiting room.

But by 10 they knew Lance would not survive the night and rushed him in for exploratory surgery. He came out of surgery around midnight, and they had found his bladder blocked and holding 800 ccs of urine when a normal adult male would be uncomfortable with >300 ccs . They cleaned out the infection and feel positive that he has a chance to survive now but they still don't have all the issues figured out.

the last bit that I know came in this morning

Ok, 9 AM here Noon, where Brett and Lance are. Brett just left Lance's room to go get some food and called to tell me what he knows. Lance is awake and giving the thumbs up when asked how he feels, but can't talk as he still has a ventilator tube breathing for him. They know the infection started in the kidneys or urinary track somewhere, but are not sure exactly how or what it is. They are giving Lance a ton of broad spectrum antibiotics and keeping him hydrated and on pain medicine so he is drowsy and still going to be in ICU for quite a long time, maybe weeks. No flowers are allowed in ICU but cards can be sent. 

Lance Miller /PO box 865/ Middleburg, VA 20118

One thing I need to add here is that my earlier blogs mention the hideously cruel treatment Lance faced from medical "Professionals" in the first years of his life.  That has not been the case here.  Brett says the Dr.s and nurses have gone out of their way to explain that they have friends and family members with Down's Syndrome.  Higher than the average population even because many medical people wait until they are older to have children and that increases the risk.  Lance was born in 1975, and is turning 40 in October this year, God and the wisdom of these professionals willing. One thing I know with absolute certainty, is the attitude of the world toward these people and their extra chromosome has changed in those 40 years, and the love and compassion coming back to him now, is a reflection of who he always has been.

Prayers welcome of course.

Lance and I in Virginia, July 2013

Mom and Lance at the Smithsonian Museum of the American Indian

With cousins at Thermopiles, Wyoming

Riding Red Devil at Hell's a roaring outfitters

On a trip to build homes in Santiago Atitlan in Guatemala

Latest Lance Miller update from Brett on Sept. 2 at 6AM

"Lance has not been making the improvements necessary to consider him on the mend quite yet.  He will be going in today for a second surgery.  The good news here is this surgery is solution oriented.  They have found the source of urine leakage into his abdomen and will be placing a tube from kidney to bladder. Lance is still very, very sick.  His white blood cell count is 4 to 5 times that of an average person who is very sick.  I believe he will come through all of this and be back to terrorizing the local restaurants very soon."

Team Lance Miller update: 9/02/2015 12:15 from Brett 
Lance's surgery is postponed for at least today. They are giving him some more time to heal and get a bit healthier before performing surgery again. This surgery is necessary but not an emergency this time. Lance looks good and is getting back to his usual sassy self but gestures that he is happy to be in the hospital getting better. Leaving him rest now. He had 12 IV bags running earlier today.


My phone was down with the rest of a large part of the Northernmost of CA on the third so I didn't get the update until today when our brother got through to say he had no real news. Just rest and recovery in the ICU yesterday and that will probably continue today. Today's also our Dad's Birthday and I still have to remember that with a sad little smile because even though I've been missing him for 18 years, I'm really glad he was born. Happy Birthday, Paul Miller.

Dixie Miller Goode's photo.

Last on 9/07/2015
Lance is off life support and down from 12 IV lines to one.  He has been taken out of the ICU and allowed to drink and may have his follow up surgery for repairing the leak between Kidney and Bladder on Tuesday

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