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|Newsletters: My Life Long Journey on PN|
My Life Long Journey on PN
My name is Casey Kellogg. I live in Hornby, New York. I was born on December 25, 1990, at Arnot Ogdon Medical Hospital in Elmira, New York. I weighed four pounds, fourteen ounces, and was eighteen inches long. I was born four weeks premature, with a condition called gastroschesis.
Right after I was born, I had to be rushed to surgery to have my small intestine tucked back inside me. During surgery, the doctor needed to remove all of my small intestines except four centimeters. After the surgery, the doctors told my parents they had two options.
The first option was my parents could try taking me home on an intravenous therapy called parenteral nutrition (PN). They were told that could cause me a great deal of suffering and my life expectancy would be short. I would be in and out of hospitals with possible line infections or liver failure. They told my parents it would be an uncomfortable lifestyle for me.
The second option was for my parents to bring me home to die. I would only be given hydration fluids and I would starve to death. The doctors felt that this would be the most sensible solution because I would not suffer as long.
The panel of doctors even had a meeting about me. All but one of the doctors agreed that I should not be put on PN. They voiced this opinion to my parents. After careful consideration, my parents decided to bring me home on just the hydration fluids, to let me die a more peaceful death. The doctors gave me three weeks to live.
Three weeks later, I was still here! I had lost some weight, but I was still here! When my parents took me back for a checkup, the doctors were amazed at how well I was doing. Even my electrolytes were still in pretty good shape.
At that moment, my parents just knew I was meant to live. They told the doctors that they wanted me to start PN therapy right away.
My parents and doctors knew that being on PN would make my life different forever. I have had to overcome many obstacles and I have many goals to achieve. Now, at seventeen, most times I think of myself as living a pretty normal life.
I have a family that helps me through things when I start to struggle. They always say I have great strength and I will have that for the rest of my life. My parents say it is this strength that has gotten me through all of the obstacles.
Growing Up on PN
Because the doctors had only given me three weeks to live, members of my family considered me the “miracle baby” on my first birthday. Everyone in my family came to the house that day to celebrate. Although I had made it to my first birthday, I had gone through some pretty tough times to get there.
To begin, my parents had had to search for a doctor who had a positive outlook for me. They ended up in Binghamton [about one and a half hours from Hornby]. During my stay in Binghamton, the doctor tried giving me drip feeds through a tube. This made me vomit often.
The doctor referred me to a pediatric surgeon in Syracuse to see if he had any suggestions. [Syracuse is about two and a half hours from Hornby.] My parents liked this doctor a lot. His name was Dr. Ratner.
He introduced me to Madeline and her son Roy, who was also on PN. My parents were finally given a true sense of hope. I think Roy was four years old when we met. He sang the alphabet to my parents.
When I was really young, I had many central line infections. I was in the hospital a lot, just like the early doctors said I would be. I lost line after line. I was running out of places for new ones.
Finally, the only thing Dr. Ratner knew left to do was to open up my chest cavity and place a new line right next to my heart. It was a complete success! I had that catheter for four years. My parents were so grateful.
Although my catheter worked great for many years, I was not faring so well health wise. I was vomiting up to twelve times a day sometimes. By the time I was two years old, Dr. Ratner thought that it would be wise for us to meet with a doctor from Albany. He referred us to Dr. Lyn Howard [co-founder of the Oley Foundation].
Dr. Howard was my lifesaver. When I met her, I was a bloated mess. She spent a great deal of time listening to my parents talk about the history of my life. She wanted to know every single detail, so she could help me the best she could. She even wanted to hear about my family!
Because I was vomiting so often, she suggested I have surgery to wrap my esophagus. Several months after that surgery, my health began to improve. I became less bloated and a little bit stronger, though my legs didn’t gain enough strength for walking until I was four years old.
Although I wasn’t real strong physically, my immune system proved to be. I was infection free for the entire time I had that central line. Unfortunately, that line became blocked. My mom could no longer flush fluids through it. Dr. Ratner was still my surgeon, so we went to see him.
There was nothing he could do to free it. Everything he tried, failed. The only option was to remove that catheter and hope to find a new site. Keep in mind, this was in 1994.
In Dr. Ratner’s first attempt he went through my back muscle. This worked, at first. When my mom hooked me up the first night, I was in severe pain. The line had slipped out and fluid was collecting inside me. The doctor’s last attempt was to go through my liver. That failed as well. It seemed like my parents had to take me home once again to die.
During this time, I lost a lot of weight. I dropped down to just thirty-two pounds. I was getting very weak and my hair was falling out by the handful. I could barely stand up on my own and I was in a wheelchair at school. This was an attempt to make things easier for me.
I also had to have a G-tube at this time. My mom used to mix all kinds of stuff together to keep me going. For nine months I continued on this path. I started to fall behind in school.
Finally, Dr. Howard said she found someone who thought they could help me. My parents took me in right away. The surgeon placed the catheter through my back muscle once again. Thankfully, this time it worked. Within weeks, I was feeling stronger.
I was back to school without a wheelchair. However, at school it was like starting all over again. I had forgotten everything I had learned.
School has always been difficult for me, especially math. Yet I am still in normal classes because I give it my best and I have always put school first. I will never give up. I was always afraid of getting picked on at school, but now I just put that behind me and forget about it. I am now in tenth grade and I have many friends who accept me for who I am.
When I get home from school, I have a very tight schedule. I get hooked up to my PN five days a week for twelve hours each time. Even with all of this, I am still able to fit in a lot of activities. I like to play baseball, ride a four-wheeler, and go bowling. My future goal is to go horseback riding.
Just four years ago, when I was thirteen, I had to have my gallbladder removed. I had developed several stones and I was in a lot of pain. With all of the surgeries I have had, I have a scar on my front side that looks like a cross.
Today, I still have a central line that travels through my back muscle. I have had many central line replacements; however, I have only had one infection in this site. That occurred during a trip I took to Myrtle Beach with my family.
Dr. Howard was so supportive. My mom called her from the hospital in Myrtle Beach and she told the doctors exactly what to do to help me. I’ve lost the other lines because they became blocked or they slipped out of place. The good thing is that they have always been able to put one back in the same place.
I have never thought of myself as having a disability. For all of the things that I have gone through, I think I have had a great life. Even though I have a catheter, I have made my life as normal as I can, and as normal as it will ever be.
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Feeding Tube Awareness Week
2/18/2017 » 2/21/2017
Oley exhibit at A.S.P.E.N.'s Clinical Nutrition Week