Johnny D'Antona



Happy Birthday Johnny

It was July 17, 1998. Johnny, myself and his 1 year old sister Amanda woke up as if it were any other day. The kids woke up and I gave them baths. We were getting ready to go on a mini vacation in a few days, so we decided to go out shopping to pick up last minute things for our car trip. We were going to Sesame Place for two days.

After we arrived home, I started to pack our clothes. Johnny and Amanda were watching television. Johnny came into my room and said he was tired and I told him to lay down and take a nap. He did. He woke up ten minutes later with a fever of 104.7.

My husband came home a little while later and I told him that Johnny was sick. We gave him Motrin and Johnny fell asleep again. I then went to the hospital to visit my mother who was waiting to have open-heart surgery. While I was at the hospital, my husband, John called me and told me that Johnny started to vomit and the fever was not breaking.

I went home immediately. When I arrived home, my husband was changing Johnny’s clothes. He noticed a little red spot by his groin and asked me if Johnny had hurt himself on his bike or something. I said not that I knew of. At around 10:00pm Johnny and Amanda went to bed for the night.

At 12:00 in the morning, Johnny woke and told me he was thirsty. I knew he was still running a fever, so I got up and went to him with a glass of water, afraid he would dehydrate. It was a very hot night, so Johnny went to sleep in only his underpants. When I went to his room and turned on the light I saw that he had more red spots on his body. I counted about six of them in various places (on his chest, back, behind his ear, his arms etc.). I just knew something was not right.

I called his pediatrician and explained the situation. He asked me to put pressure on the spots and see if they turned white when I touched them, like a sunburn would. They didn’t. He then advised me to take him to the emergency room. My husband works nights, so I called my in-laws and asked if my mother-in-law would come sit with Amanda and if my father-in-law could take me and Johnny to the emergency room at Mercy Hospital in Rockville Centre, New York.

They were at my house in minutes and we rushed Johnny to the hospital. I remember my father-in-law driving so fast and thinking to myself, "why is he rushing, Johnny only has a bad rash". Thank goodness his went as fast as he did (I would find out later).

When they took us into an examining room, Johnny was so scared, I kept reassuring him that everything would be ok. Johnny’s rash started to worsen right before my eyes. He started turning purple all over his body. The doctors started to take blood from him and then put him on an IV pump. I couldn’t understand why.

They came back about a half an hour later and said Johnny’s blood count was extremely low. I didn’t really know what that meant, but I did know something was wrong. They told me they were admitting him. I rushed to the phone and beeped my husband on his beeper. When he called back, I told him to get to the hospital now, something was not right with our son.

By the time my husband arrived Johnny was unrecognizable. He was full-blown purple. The doctor told me he did not know what was wrong with Johnny and that he had contacted Winthrop University Hospital in Mineola because they had the best pediatric ICU unit around. He told me they would be coming to transfer Johnny there within the hour. 

I couldn’t understand, my son was fine hours ago. My husband and I just sat and cried, fearful of the unknown.   The doctors from Winthrop arrived and they examined Johnny, they then asked us to step outside with them.  They proceeded to tell us that Johnny was gravely ill and they would have to put him on a respirator to help him breath.  They told us to trust them, and we did.

We went back in to see Johnny, he knew something was wrong, because he asked me to give him a kiss and a hug and then he looked at me and said "I love you mommy".  I told him I loved him too.   We stepped out so the doctors could work on Johnny.  After they intubated him they told us they were ready to transport him. They told us he was so sick he might not make the transport.

What was a ten-minute ride to Winthrop seemed like hours.  I was screaming in the car while my husband drove behind the ambulance.  We couldn’t go in the ambulance with him because there were three doctors in there working on Johnny as they sped to the hospital.  They had Johnny in a room before we could get out of our car.

When we reached the floor where our son was, a doctor pulled us over and asked my husband to go to admitting and sign the papers for my son.  While he went, another doctor came and pulled me, my father (who was waiting for us when we arrived) and my sister-in-law into a small room. I’ll never forget her words.  She told us that Johnny was gravely ill, that there was no way he could survive what he has.

She asked me to call my family and priest to come.  Johnny only had about two hours to live. My life shattered right then and there.  How could I call my mother, who is in the hospital and tell her to come if she wanted to see her grandson for the last time?  How could I call my in-laws?  I knew I wouldn’t call my priest.  It wasn’t real.

We later found out Johnny had what is called Meningococcemia.  The worst and deadliest form of Bacterial Meningitis anyone could get.  It was killing everything inside of him.  Johnny could not survive.  He received several blood and platelets transfusions to help keep him alive.

Before I knew it, our entire family was there with us.  All of our friends had heard and rushed to be with us.   Two hours had pasted and Johnny was still holding on.  Then four hours, then twelve, then twenty-four.  Johnny made it.  The doctors killed the infection, but the damage had been done.

They had to do emergency surgery on his legs and left arm.  They had to make incisions in his legs and arm to release the toxins that were in his system.  They told us he was still too weak, and probably wouldn’t survive the anesthesia, but we had to take the chance because if he did survive, it may save his extremities. 

He came out of it fine, we would just have to wait and see if his legs and arm could be saved.  They took a cat scan and told us that the infection hit his brain, but until he was off of the respirator we would not know what parts it effected.  They told us that the infection killed the arteries in his limbs and he could loose his arms and legs.  He maybe blind or deaf.  We just wouldn’t know until him comes out of his coma like state.

A few days later he did.   When he opened his eyes for the first time, he called his sister’s name. We knew he was back.  His mind was there, he then looked over at us, we knew he could see, we asked him if he still wanted to go to Sesame Place, he said, "yes."   We knew he could hear. Thank God, our baby was here.

As days passed there were still no change with this legs.  His arm came back little by little.  We were in Winthrop for a little over a month.  On August 12, 1998 they transported us to New York Hospital – Cornell to the burn center.  They said the damage the blood did releasing into Johnny’s skin was like having third degree burns.

When we arrived at Cornell the doctors examined him.  Both of his legs were black, with no sign of healing.   They were like leather.  On August 13, 1988 they amputated Johns legs.   His left leg above the knee, his right below the knee.  He also lost three fingertips on his left hand and the top of his left ear.  They also found deterioration in is left elbow.  They had to take the muscle from his side and bring it down into his elbow.

We are still waiting to see if he will have full motion of that arm.  We stayed at Cornell for a month and a half.   After about nine operations at Cornell, on October 1, 1998 they transported Johnny once again to St. Charles Hospital and Rehabilitation Center in Port Jefferson where Johnny is receiving intense, physical, occupational and speech therapy. 

Johnny has been in St. Charles for about three weeks now and is doing well.  He is learning to get around in his wheelchair and is anxiously waiting to get his "new" legs.  Johnny just celebrated his fourth birthday on October 12, 1998.  Johnny came home a few days before Thanksgiving.  What a blessing and a way to give thanks.

Johnny now has prosthesis and walks well with them.

We are truly blessed with our Earth Bound Angel.

My Perfect Son

Just a boy who loved to run and play
with no cares in the world, just
living day by day.

Play dates and parties,
swinging on swings
too young to know what your short
life would bring.

Within a few hours it would all
change forever,
so small and fragile you will
never remember.

The life that you knew, where you
were so safe and secure,
was taken in an instant,
you will not be who you were before.

Struggles you'll face, each day of your life
challenges you'll be forced to overcome,
you are my hero,
you are my life,
you are my perfect son.

Written for Johnny D'Antona, with all my love, mommy.

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Sisters Amanda, Elizabeth and Johnny


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