Sarahs Journey

MAY 2006--ONE YEAR!!

Welcome to Sarahs Web Page. It has been provided to keep our loved ones updated about Sarah.
Since the title of Sarahs page is Sarahs Journey I thought it appropriate to share with you the story. Sarah was born full term, routine delivery. I thought she looked yellow(she was!!) but the nurse said it was no problem, a lot of babies were born a little juandiced. So, I did not worry. I knew nothing at the time. When she was two months old her doctor noticed her "olive" color. Which was strange since the rest of us are so pale you can practically see through us:) She ordered bilirubin tests and thus began our journey.
We were sent to U of M the next morning. I still had no clue. I found out they were looking for a liver disease. What?! So they ordered many, many tests and were a little worried since she was just past the age to potentially correct biliary atresia.
Turns out she had neonatal hepatitis. Which according to the docs is a wastebasket term. Just a name to call a baby with a swollen liver. They could find no cause
or infection.
When she was four months old I took her to the ER for a swollen cheek which turned out to be a blod clot. She was air lifted to U of M where she spent a week in the PICU. We were told that Sarahs INR was 49. For those of you that don't know that basically means that her blood was not clotting at all. When they attempted to do a central line to deliver fresh frozen plasma she started seizing. The doctor told us that she was likely bleeding in her brain and was not expected to make it. They sent her for a CT scan which did show bleeding in the brain. They also administered Vitamin K, which PRAISE GOD stopped the bleeding!!! Miraculously she survived even this and all was good for a time.
She had a liver biopsy at 8 months which showed cirrhosis. No surprise there. It did not however show us any cause of disease.
Two years passed. Her lab work came back off but not too scary. Then when she was two(two days after her birthday!) she awoke at 4:30 in the morning and vomited blood. No one had warned me about this possibility! So we rushed her to the ER where the doc said if he could not stop the source she would have to meet the transplant team. This was the first time he ever used THAT word.
Sarah had developed esophageal varicies which bled. He was able to band(sort of cut off) the problem. She took a few days to recover from that. So every six months she went in for a check of her varicies. Usually there was nothing to be found. And if there is it was easily corrected.
As Sarah grew her belly got very large and rounded. She is much shorter than kids her own age but she keeps up with them in every other way.
We just had our first visit with the transplant team tuesday, may 3rd. Sarah had been doing well for years but her lab work started coming back worse. Then it got really bad! She was listed for a liver transplant and has been transplanted. Within the span of one month we found out that she needed a new liver and then she got one! I know that is was providence that made her wait short. Gods timing is His own and this time was no different.
Sarahs journey will last a lifetime. She will always be on meds and need to visit the doctors for a checkup. But the plan is that she will live a long life much healthier with her new liver.

But he was wounded for our transgressions,
He was bruised for our iniquities; The chastisement for our peace was upon Him,
And by His stripes we are healed. Isiah 53:5

Journal

Monday, May 15, 2006 11:17 AM CDT

ONE YEAR ANNIVERSARY!!!!!!

Sarah has been truly blessed. She has had no complications. Her meds have been significantly reduced. She may be down to three soon!! Her life so far is nothing short of a miracle.

I ask that you would join us in praising the Lord for working in her so clearly and please remember the donor family especially now. Our joy is, I am sure, quite the opposite of their sorrow.

Michelle

Read Journal History

Hospital Information:

Patient Room: HOME!!

Motts Childrens Hospital

Ann Arbor, MI

Links:

E-mail Author: recycleyourself@hotmail.com

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