Welcome!! Grab a cup of coffee and visit with us! We hope you enjoy our story! (((HUGS)))

Welcome!! Grab a cup of coffee and visit with us! We hope you enjoy our story! (((HUGS)))
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Thursday, October 18, 2012

What have they done?

I wrote about my beautiful boy here~
http://theroaddownhome.blogspot.com/2012/10/when-boy-with-ds-has-been-hurt-beyond.html

I knew something was terribly wrong with Jacob. I knew in my momma's heart. I took this beautiful boy into my heart as my son. And my momma's intuition told me. Something terrible is wrong.

We were waiting to ask the Drs to help solve the mystery. Jacob had a Dr appt. on Tuesday. I cut Noah's hair for his Monday Dr appt, and then I cut Jacob's beautiful brown locks.

This is what I found.

                                                I was right.
         But oh how I wish, Dear Precious Lord, I had been wrong.

When you get the file of a child to commit to, there is a medical profile. Then you should get it updated if anything happens before the adoption.

Four of our 5 boys have the same medical information on their adoption papers as their files. You don't get to see the adoption medicals until after you adopt the child. He was adopted in July- Tom saw the papers in September. So we had breezed through reading Jacob's, not noticing that between 2005 and 2007 something new was added!

They stated~
Nov. 11, 2011- Nov. 21, 2011 he was hospitalized in St I*** R*** in S****. For Endoscope fenestration (BRAIN surgery) of the arachnoidal cysts.

and the 2nd sentence said he returned to the hospital Nov. 23rd to Nov. 30th and "was again hospitalized". What happened?

These cysts are serious. That surgery is somewhat experimental- NOT a cure. There is no cure for these cysts. 

TWO hospital stays within days? That's a 3 hour drive to and from his orphanage. Eighteen children died in his orphanage in 2011, why weren't they hospitalized?
 
No information was given on the out come of the surgery.
 
None of his medicals given to us before, ever stated anything about arachnoidal cysts or health issues suggesting them. And the symptoms we read were so vague you'd need the child to "tell" you they had them. Plus there were many children in that orphanage that "presented" with multiple symptoms so obvious (like hydrocephalus) that were not treated. Why?
 
Jacob's brain surgery could have waited till we brought him home.
 
We committed to Jacob in Dec. 2010. Mosie was very sick in August 2011, they told us because a friend was there and to see him she had to go to the infirmary where he was. They said if Mosie was too sick they could take him to the Children's Hospital a few miles away.
 
When Tom visited the 3 boys in April, Jacob was 5 months post op.
They told him he was sick with a virus. Now we don't believe that. Jacob's visits were very brief and Tom was with our 2 other boys plus another adoptive family and the translator in a tiny room. They had to sit in that room crowded together. Tom could not have noticed anything different about Jacob in that short time.
 
Once home we had noticed Jacob's left leg was weak. Our Dr showed us it is smaller and atrophied. It is weaker. Also Jacob's left arm is smaller. (This was not in his medical file.) But his right arm is weaker. Most likely from the surgery. If it was the "left" arm it would have "matched" the left leg weakness.
 
Our poor Jakie cried when we had him bear weight and "walk" with us. We had no idea, it must have been painful.
Now when he looks "out of it", I think his head must feel incredibly "odd" to him post surgery.
 
Right now Jacob is 10 months post op. On his trip home he was 9 months post op. What if he'd had a seizure on the plane? Tom had no idea what poor precious Jakie needed. He had no idea what Jakie had been through. We can't even imagine how he feels right now? Does his head hurt? Does he have pain?
 
He went through this surgery alone.
 
You/we all prayed him home, donated and helped him have a family.
                                    THANK YOU!!!
                                     God Bless you!
 
He has a referral to see a pediatric neurologist. Then he'll get his MRI. And we'll really know more about what happened to him and if he needs future surgery. We should then know how dangerous the cysts are to his health, if he has them. And how to better care for his needs.
 
Precious Lord in Heaven we THANK God for this beautiful boy.
 
Please pray for Jakie with us.
(((HUGS))) We LOVE you ALL!

15 comments:

  1. This is just awful. You and your family are in my thoughts every day!

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  2. Oh Lord God....please hold this family tightly in your precious hands.

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  3. Praying for you and precious, Jake. I can't imagine your horror when you discovered this. Just praying.

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  4. Wow...heartbreaking...praying for healing and answers for your precious son!

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  5. Oh, why? why would they operate on a child if it could have waited and then the adoptive parents and not the state would pay for it? why would they not be more specific in the reports? it is so sad and scary to think about him being a guinea pig for some experimental treatments--i sincerely hope that was not the case! I pray you either get answers (from overseas or american doctors) or God gives you peace about not knowing. And I pray that God will overcome whatever was done to this poor little guy, and heal him.

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  6. Mortified...Praying for Jakie -Kristie Du Sablon

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  7. WHY indeed, WHY, WHY, WHY?! Why, out of all the children there with desperate health needs, did they hospitalize and operate on him? Did his needs at some point get so bad they had to acknowledge them without you or anyone else who went there knowing? Or was this some sort of primitive 'treatment' that they thought would make him easier to handle... something that he never even needed at all... like the experimental treatments they did on people with disabilities in this country years and years ago, things like lobotomies that led to deaths? Ugh. Is there any way of getting answers from That Place since all the changes that have occurred, time has passed, and need to preserve a relationship for future adoptions? Poor boy. I will pray for him and your whole family. Your poor Mama's heart. I'm so sorry.

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  8. Arachnoid cysts are not usually operated on. They are benign and don't usually cause problems. It is puzzling that surgery was done on Jacob for arachnoid cysts and not for other kids with hydrocephalus. Especially as he has Down syndrome and is culturally regarded as undeserving of intervention. Endoscope fenestration does not typically leave a scar like that...it's very long. Hopefully we get better answers from the MRI as to what happened.

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  9. WOW Elizabeth! I have no words....
    I am praying!

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  10. I'm so sorry for all he has went through. There is really just no words to describe how sad I am for him...but so thankful he is now in the care of people who will love him without end.

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  11. I'm so sorry, Elizabeth. Praying you get into see the pediatric neurologist soon so that you can get some more answers. Not really knowing what happened must be so hard. That's crazy that the week after I saw Jacob standing in his crib, he was having brain surgery!
    Big hugs to you and all your little men.

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    1. I thought the same thing Carol. Right after you saw him. And then no one saw him again until Tom did. In fact I think when Gail's husband was there they asked about each boy and the director (not sure which Director) said "condition unchanged" for each boy. That was a lie!

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  12. I am just so, so sorry, Elizabeth. :(

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  13. I am so sorry to hear this. Praying God will place His healing hand on Jake to cover all the ill effects.

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  14. Are they experimenting on the disabled children like Dr. Mengele did? since they are "disposable", "useless eaters"??!!

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