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Sean Patrick Forney
First of all, let me say that all of our children are miracles, as are all children everywhere. But in Seans case, there have been some very special hurdles to have to go through, and throughout his entire life so far, the Lord has been right there with him, and his family. So many wonderful things the Lord has done in our lives, that we wanted to share what we could with others, perhaps to give some hope to their lives, and to share that no matter what, our God is in charge of all things and can make all things come together for His glory. So let me start by giving you a fairly brief history of Seans health situation. If you would like to read more, there are links to further information on some of his diagnosis, as well as to a longer history of his life. (Along with photos of course!).
Let me introduce you to our little miracle. Sean was born in January of 1997, with a birth defect called Congenital Diaphragmatic Hernia (CDH). As a result of this birth defect, his intestines were badly malrotated, and when he was 3 1/2 months old he became quite ill and had 2 emergency surgeries to remove 40% of his small intestine, ileo-cecal valve, and several inches of his large intestine. The condition of not having a large portion of intestine is called Short Bowel Syndrome (SBS). He had an ileostomy and had to poop into a ostomy bag (we called it his poop pouch!). Since he would be unable to absorb as many nutrients from his intestines to the fullest extent, a central line (Broviak) was placed on his chest and he began what we hoped would only be a few months of Total Parenteral Nutrition (TPN).
When Sean was about 9 1/2 months old, 6 months after the placement of the ileostomy, he underwent more surgery to repair his intestines, to reattach his small bowel to the large bowel (called re-enastomosis). We hoped that this would be the beginning of the the end of his need for TPN, but sadly developed a severe case of reflux and an oral aversion so severe that he would not eat a thing. Instead of reducing his need for TPN, we had to increase the volume he received. Several medications were tried, and failed, so we took him to a pediatric gastroenterologist for a second opinion. It was decided that Sean needed more surgery, called a Fundoplication. This was performed a few months later, as well as a G-tube placement (Gastrostomy) and an anteroplasty to reshape his very malformed stomach. In addition he had a new central line placed, as he had outgrown his old one and it had broken 9 times during the 1 year period he had it.
Finally, we were able to put something in Seans stomach with the g-tube. He started receiving Peptamin Jr (a predigested formula) in very small amounts with a very slow and gradual increase. He did have a fair amount of retching happening, but because of the fundoplication he was unable to vomit and we had to vent him through his tube (empty his stomach) in order to stop the retching. Over time he did manage to do quite well with the tube feeds, so well that he was reduced in his TPN to only 50% of his caloric needs. Unfortunately he had a bad time once again with retching, and he ended up with a hiatal hernia and needed to have his fundoplication redone at the same time as the hernia repair. We had to reduce his feeds back down to a very small amount, about 20% of his needs, and again increase the TPN back to where it had been at his maximum volume.
Currently he is taking about 225cc of Peptamin Jr, and 900cc of TPN. He is the happiest little 2 year old anyone could hope to meet, and truly has a marvelous life. He runs and plays with his brothers, Kaj and Joseph, he has temper tantrums just like any 2 year old, and is starting to be able to verbalize how much God has done for him. One of his favorite phrases these days is "Jesus, my heart!". He also has a love for God's creatures, cows, horses, sheep, you name it and Sean loves it!
Psalm 100
Shout with joy to the Lord, O earth!
Worship the Lord with gladness.
Come before him, singing with joy.
Acknowledge that the Lord is God!
He made us, and we are his.
We are his people, the sheep of his pasture.
Enter his gates with thanksgiving;
go into his courts with praise.
Give thanks to him and bless his name,
For the Lord is good.
His unfailing love continues forever,
and his faithfulness continues to each generation.
More about Sean Patrick Forney (long!)
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We are honored to have
received: For Helping
To Fight The War Against Birth Defects Given on
3/26/99, by CHERUBS- The Association of Congenital Diaphragmatic
Hernia Research, Advocacy, and Support Home, CDH, Northwestern
CHERUBS, Seans (long) story, Short Bowel Syndrome, Gastrostomy, Fundoplication, TPN, Other Other Links
