Keep Fighting the Fight: A Living Legend

John was born with a rare birth defect called Right-sided Congenital Diaphragmatic Hernia (R-CDH). No two cases are ever the same so treatment can be difficult. When John was born he was given a 10% chance to live. We were asked what religion we were so they could accommodate us in having final rites said. As raised Catholics we had our son baptized the day he was born and his last rites on the same day.

It’s a brutally harsh birth defect that left his tiny little body of only 7lbs deflated, gray and lifeless. They started off by putting john on Oscillatory ventilation that provided 4X’s the normal ventilation and shock his body just to keep it going. When he graduated from the oscillator he went on a hospital ventilator and ECMO (A heart and lung bypass machine). All of these are considered “last resorts” to keeping “Baby Murphy” alive. He was on ECMO for 14 days. They told me he would need 21 days and then we will “see what happens”. 6 months into his life I learned that ‘see what happens’ meant we would have to stop life support. I always said my ignorance to all he hospital terms and procedures is what kept me from breaking down, I had no clue these were last resorts at the time. He spent the first 13 months of his life in the ICU at Children’s Memorial Hospital.

7 months in, he became addicted to Ativan and Methadone. Weaning him off those meds was surreal. With each wean of the medication he would shake and cry uncontrollable. They finally put him on Ketamine to get him off the other two. I learned Ketamine is what they give drug addicts to get them off their drug of choice.

8 months in they moved him from the Neonatal unit to the Pediatric ICU. He was growing and needed doctors that could keep up with him. No longer a baby, he graduated to Pediatrics.

He was always fighting infections, virus or just being stable on the vent. Our goal was to get him on a home ventilator so he could go home. However, the support of a home ventilator isn’t as strong as a hospital ventilator. So he needed to stay in the ICU until he was strong enough to transition over.

At 11months we have a team meeting. The head of the Pediatric ICU said “I wouldn’t doubt it if he is here another year”. With that statement we set up house in the ICU. I started bringing all the toys that family and friends bought for him to the room so we could play or learn every day. I played with him in that little box with windows every morning, watched him nap, feed him, loved him and somedays just sat there watching him while he was in an induced coma. I resigned to the fact that this was our second home. Because he was MRSA positive we were not allowed to venture out into the halls or waiting room. It was literally our prison cell. I used to refer to sitting in the room as being like zoo animals. Please would walk by, look in while they passed and smile or not smile. I would smile back or pretend I don’t see them. If John was having a bad day sometimes they would stop in, poke their heads in and ask how we were. I hated that? I hated that they asked “How are you?”, that always set me off into tears because I wasn’t good and I didn’t want to talk about it.

Our nurses were our friends. We chatted about life. I knew if they were married, single or gay. I knew if they liked their parents, if they were in school or if they exercised ever morning. I knew if they were training for marathons or loved sitting in front of the TV every night. They knew a lot about us as well. They were family, there every day with us helping us to stay positive, loving us in their way.

12 months in I felt there was something different about John. John would need to be in an induced coma every once in a while to let his body rest. He was sometimes his own worst enemy, fighting everything. Letting his body relax allowed him to get stronger for the next battle. This time he seemed stronger to me. I pleaded with the ICU team to try the home vent again. They were resistant but finally agreed to try while keeping a very close eye on him.

The first day was always ok. The second day he was still ok. A week later everyone declared it was a miracle he was still on the home vent. I knew he was different. I knew it!

A month later, after 13months in that place, he came home. He was on pressure control and pressure support ventilation, 30% oxygen, a feeding tube and full of cheeky smiles and love. We were so happy to finally be bringing our boy home. When we arrived home there was a parade of family and neighbors outside our house. The house had a banner covering the front saying “Welcome home Johnny!” It took 3 people, Kevin, the nurse and myself, to carry him into the house safely. Everyone stayed outside crying and laughing with tears watching John arrive home for the first time.

3 days later we were in the ER. After that we made almost weekly ER visits for a few months. But he was home and striving. We were back in the ICU at least every 3 months for a few week visit because of illnesses. With every visit we seen the same group of nurses, doctors and therapist from his first 13months. He was like a celebrity coming to visit. Everyone wanted to see John Murphy, the living legend.

Over the past 12 years so many babies have lost their battle to CDH. This blog post was inspired by another lose, less than 2 years old.

We had our uphill battle with CDH but we also know it could have been a lot worse. I personally struggle with the fear of what will happen if he gets sick again, I call it medical PTSD.  Sometimes I wake up in the middle of the night in a panic to check if he is breathing. He still sleeps in my bed. Every night when I come home from work the first thing I do is go into our bed and check if his chest is moving, without waking him up. When another CDH baby earns their angel wings I panic where stand. Last night, I was at work and had to hold back tears when I heard. I had to facetime John to make myself calm down internally.

I cannot explain why these things happen but I am so grateful that it happened to us. John has changed our lives for the better. He has brought people into our lives that we never would have met. These people have added so much love and gratitude into our lives. He also reminds us to remain grateful, laugh often and to never give up!

#KeepFightingTheFight #OnJohnTime #InYourFaceCDH #Love #BeGrateful #KeepTheFaith

#ALittleStrongerALittleLonger

Daily Prompt: Legend

Boston Hospital: CDH Research

 

 

 

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You got the BUNZ hun!

Johnny’s BFF is an 18 year old girl named Emma. She is sweet when she wants to be and the polar opposite of that at times. She can’t help it because she has a nuero disability that causes her to lose control. However, John and Emma together is always just hot dogs, McDonald’s and short naps, always happy times.

We have very few people that can watch John for us. Actually, we have two, Erin and Auntie Patsy.  Erin is Emma’s mom and Auntie Patsy is our neighbor from the old house that we lived in for 17 years. She has become part of the family, the only “family” member that has taken on the hard task of learning how to be alone with John. We love her more than words can say, and Erin, of course.

One afternoon Erin had taken John for me while I worked. When I arrived home John had learned a new song.

“Anaconda don’t! Anaconda don’t! Anaconda don’t want none unless you got BUNZ hun!”

I bet that song is stuck in your head now.

We have been shouting it out just like that since he learned it. You have to have the emphasis on BUNZ, with a Z.

In March 2017 John came down with the flu. He ended up in the Intensive Care Unit (ICU) of our children’s hospital for 5 weeks. Thankfully, he recovered and was sent home on 4 liters of oxygen 24/7.

While in the ICU we met a really cool nurse named Katie. I really loved her vibrant personality and genuine smile. As an ICU mom for the past 12 years, I have sat many hours getting to know John’s nurses and vice versa. This nurse told me her story, with hardships and all, while smiling with gratitude. I loved that about her.

When John started to feel better his personality started to shine through again. He’s a clown that loves to make people laugh. He instantly adored Katie and her funny personality. One day he looked right at Katie and said “You got Bunz hun!”. Katie’s eye brows raised with a grin on her face while giving a puzzled look. She replied “Well, yes I do have bunz Johnny.”. Johnny pointed to the top of her head. Katie and I looked at each other laughing because we realized he meant the bun on her head!

After that, every time someone with a bun in their hair walked by Johnny’s ICU room Katie would stop them and ask Johnny, “Hey Johnny, what’s she got?” and Johnny would shout back, “You got bunz hun!”.

He had the entire ICU laughing.

Always making people laugh…

A few weeks later I was pushing John in his push chair into the bowling alley. There was a woman walking in front of us. She was a larger woman with a larger then average bottom and a bun in her hair. Johnny shouted to her “You got bunz hun!!!”

When she turned around I was already pointing to the top of my head saying “He means the bun on your head”.

7 months later I am still explaining the bunz comment to random people….  Ladies with bunz, men too….Johnny will point it out to you. Because he loves bunz!!!