caring for a terminally ill baby.....

tinkerbell2008February 21, 2008

HELLO,

I AM TAKING CARE OF MY TERMINALLY ILL GRANDSON SINCE HE WAS 2 MONTHS OLD. HE IS SOON TO BE 9 MONTHS OLD. IT HAS BEEN A ROLLER COASTER RIDE TO SAY THE LEAST. I GRIEVE FOR HIM ON A DAILY BASIS. HE HAS A RARE GENETIC DISORDER ( AICARDI-GOUTIERES SYNDROME). HE IS ON OXYGEN 24 HOURS A DAY, UNABLE TO HAVE A BOWEL MOVEMENT WITHOUT SUPPOSITORIES. HE IS FED FORMULA AND MED'S BY G-TUBE ONLY. HE IS ON MEDICATION FOR SEIZURES, ACID REFLUX. HE SCREAMS AND CRIES TO GO POOP , WHEN HE HAS GAS OR DIFFICULTY BREATHING OR JUST BEING FUSSY. WE HAVE A NEBULIZER WE USE ON A DAILY BASES NOW AND SUCTION MACHINE. WE HAVE TEMPORARY CUSTODY AND ARE WORKING ON PERMANENT CUSTODY. PARENTS DROPPED OUT OF HIS LIFE WHEN HE WAS 2 MONTHS OLD AND WE HAVE BEEN CARING FOR HIM SINCE. WHEN HE WAS 4 MONTHS THEY STOPPED VISITING HIM ALL TOGETHER AND NO ONE KNOWS WHERE THEY ARE. OUR HANDS HAVE BEEN TIED ON SO MANY THINGS WITH IN REGARD TO THE BABY GETTING THE PROPER MEDICAL NEEDS BECAUSE OF ONLY HAVING TEMPORARY CUSTODY. WE HAVE TO GO THROUGH THE COURTS TO GET DECISIONS MADE WITH ALL THAT HE IS GOING THROUGH. SO IT HAS BEEN A REAL EMOTIONAL HELL. THINGS SEEM TO BE MOVING ALONG FINALLY WITH US POSSIBLY GETTING PERMANENT CUSTODY SO WE CAN GET LIFE INSURANCE ON HIM AND HAVE HIM REGISTERED WITH HOSPICE, SO THEY CAN BE MORE INVOLVED. HE IS A BEAUTIFUL BABY BOY. WE LOVE HIM DEARLY, IT TOOK US AWHILE TO REALIZE THE OUTCOME WAS NOT GOOD. WE DIDN'T KNOW ANY OF THE MEDICAL DIAGNOSES ON HIM PRIOR DUE TO THE PARENTS NOT TELLING US OF HIS MEDICAL CONDITION AND TEST THAT WERE DONE AND RESULTS. WE DIDN'T FIND OUT UNTIL NOVEMBER 27TH, HIS DIAGNOSIS. HE HAS BEEN IN AND OUT OF THE HOSPITAL WITH THE PROGRESSION OF THE DISORDER. IT HAS REALLY BEEN A ROUGH ROAD FOR US. THIS IS IN GOD'S HANDS AND WE UNFORTUNATELY CAN NOT CHANGE THE OUTCOME.THAT STILL DOES NOT MAKE IT ANY EASIER ON US. HE HAD A SISTER WITH THE SAME DISORDER AND SHE PASSED AT 14 MONTHS. SHE DIDN'T HAVE THE BREATHING ISSUES. THE PARENTS NEGLECTED HER NEEDS AND DIDN'T NOURISH HER PROPERLY AND THEY DECIDED TO STOP THE FEEDINGS AND LET HER DIE A SLOW PAINFUL DEATH LASTING 2 1/2 WEEKS. WE ARE FOREVER HEARTBROKEN OVER THAT. SHE WEIGHED A MERE 12 LBS AT 14 MONTHS OLD. HE IS ALMOST 9 MONTHS AND IS OVER 14LBS AND COUNTING. HE WAS 5LBS 2 OUNCES IN JULY WHEN THEY CAME TO LIVE WITH US. THE PARENTS WERE FEEDING HIM TWICE A DAY 2 OUNCES OF COLD FORMULA, HE LOOKED LIKE A HOLOCAUST TRAGEDY WHEN WE FIRST SAW HIM. NOW HE IS A NICE PLUMP BABY, HE LOOKS GREAT DESPITE HIS OUTCOME. IT IS AMAZING WHAT ALOT OF LOVE AND CARE CAN DO. ITS A SHAME IT COULDN'T CHANGE THE OUTCOME THOUGH. HE IS SO PRECIOUS, AN ANGEL FROM GOD. THANKS FOR LETTING ME VENT........

SUSAN

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anettemartinrn

Susan,

I can only say that I am so sorry for your situation. I know how precious my grandbabies are to me. Big hugs, I wish you the best.

anette

    Bookmark   February 21, 2008 at 10:30PM
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babelphissh

Susan,
You are a blessing in your grandsons life. The days might be short for him, but you have been chosen to be the one that brightens his little day..
I will think of you and please keep us posted..

    Bookmark   February 22, 2008 at 12:46AM
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sylviatexas1

I'm so sorry.

Give that baby all the love & warmth in your heart.

I sort of know what you mean about grieving for him even as you look at his little face;

when my Aunt Lillie was in the hospital at the end of her life, I knew she was gone from me, even though she was still "there".

It must be much more intense when it's a little baby.

You might post on the Caregivers Forum;
it's for people who are caring for chronically or terminally ill or disabled loved ones, & there are a lot of warm, caring people over there who can help you with your day-to-day life as well as the "big picture" issues.

sending you & the baby thoughts for strength, love, protection, & peace.

    Bookmark   February 22, 2008 at 1:17PM
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acey

Please get hospice involved right away, they can help with many things and have social workers to help with the legal stuff too. They also have wonderful bereavement help, to assist you with the loss of his sister and the eventuality of his passing. THEY are WONDERFUL.
My prayers to you.

    Bookmark   February 23, 2008 at 3:18PM
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