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Ethan – Small Intestines Recipient

[lightbox link=”” thumb=”×300.jpg” width=”225″ align=”center” title=”Ethan First Day of School” frame=”true” icon=”image”]On February 26, 2012 at 7:15pm, I was at my brother’s house when I received a phone call that a small intestines was available for Ethan.

My wife, Carmine, rushed home from work, and we drove as quick as we could up to Riley’s Children’s Hospital in Indianapolis.  At 9:30pm, we arrived and were greeted by one of the greatest nurses in the place.  Her name was Abby.  We waited in a room for the word on whether or not it would be a good match for Ethan.

We waited and waited and waited.  Ethan was not having the best night.  It was way passed his bedtime, and we had nothing to rock him to sleep.  Abby made sure everything else was ok and kept our spirits up.  She made sure that the second she knew something, we knew something.  At midnight we become very concerned about what would happen.  We had received a call at 7:15pm and thought that surely 5 hours later, we would know something.  They ran a lot of test on Ethan to make sure his body was healthy enough for the transplant.  Finally, after what had seemed a lifetime, Abby came in the room at 2:30 in the morning and said Ethan would be getting his transplant!!!  Words Carmine and I had wanted to hear for the past 20 months!

At 4:19am, we left Ethan in the hands of the nurses that would put him on the table in front of the doctors that would save his life!  Eight hours later, after the surgery was complete, we were able to see Ethan.  He was tubes galore coming from him but our little boy, no doubt.  We spent the next 10 weeks at Riley’s Children’s Hospital.  It was really hard to be away from home for that extended period of time, but we made the best of it.  Meeting many nurses, doctors, and other transplant patients, we made the most of the time spent up there.  On May 7th, we came home looking forward to spending more time with Ethan in a not-so-hospital setting.  We started out going back to Riley’s Children’s Hospital twice a week for check-ups.  Every Monday and Thursday we would drive up and make sure Ethan’s new intestines were doing ok.

Because of the extent of the time Ethan has spent in the hospital, he is delayed in some areas like communication, gross & fine motor, problem solving, personal and social skills.  These areas have been looked at and assessed by a program called First Steps.  They have done in-home therapy sessions for Ethan since he was 8 months old.  While still delayed some, Ethan has progressed much more than expected by First Steps standards.

Ethan still has a g-tube that’s is used for feeding and his medicine.  He is on a feeding pump for 16 hours a day and off for two four hour periods throughout the day.  We are so glad to be able to have and hold our little Ethan.  We do not know nor have we met the family that we received the organ from, but steps have been put in motion to change that.  Carmine and I have sent off a letter setting up communication between us.  We have learned that is a great part in the healing process of giving and receiving an organ transplant.  We hope to one day meet the family that ended up saving Ethan’s life.

The Zoeller family has had its up’s and down’s and has been through a whole mess of surprises.  With support from family, friends and the Trust For Life family – it has made this very bumpy and challenging road seem like a walk in the park.  We would like to thank everyone that has touched Ethan’s life in any way possible.  Ethan is 2 now and is thriving in many ways!  We hope to give another update soon.

– Shane (Ethan’s dad – July 2012)

[lightbox link=”” thumb=”×200.jpg” width=”300″ align=”center” title=”Ethan small” frame=”true” icon=”image”]

Ethan, our grandson, was born June 12, 2010.  The doctors realized something was wrong right away, and they started running tests.  They realized that the nerves in his intestines didn’t work so he couldn’t take regular food.  They told us he will need an intestinal transplant to survive.  Ethan was put on the transplant list when he was just a few weeks old.  To deal with his intestinal problems, they have to feed Ethan certain food.  Now, that is beginning to destroy his liver. They told us Ethan needs a liver transplant too.

He is such a sweet boy.  He’s plump due to the food they have to feed him, and we call him our bundle of joy.  My daughter Carmen is Ethan’s mom.  She can get him to smile and laugh right on cue.  Just the sound of her voice and the look of her face gives him a beaming grin.  He’s starting to like my voice too.  It takes him a minute because my voice is deep, but then I get a smile too.

It is my hope and prayer that he will get through this, and I truly feel like he is going to get through.  It’s hard not to think about what we would do if we lost him.  I believe Ethan is a fighter.

Organ donation is probably not something people think about, but that is why education is so important.  We need to get the word out that there are children in need.  I pray for the families that have to go through organ donation.  I know they are going through a tragedy.

I had not thought about organ donation until I spoke with a friend of mine at the Eye Bank.  It just made sense to me – if there is something someone can use, of course I would be willing to give.  Only our soul goes to heaven.  We don’t need these parts anymore after we’re gone.

I like the Trust For Life posters at the Henry County Courthouse.  They say “I’m Alive” and feature kids that are alive today because of organ donation.  Well, Ethan wants to live.  He’s the sweetest baby, and I just hope and pray every day that he receives the organ transplant he needs.

Our grandbaby is in need of a liver and intestine transplant today.  I hope everyone joins the Kentucky Organ Donor Registry to help children like Ethan.

-Story by Michael Douglas (Ethan’s Grandfather)