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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Medical PTSD…Gratitude?

On the evenings I am not working Kevin and I put our son John to bed together. It is always filled with laughing, hugs and kisses. John takes a dose of melatonin every night right before bed that allows him to relax enough to fall asleep on his own. He is a happy boy, especially when he is home.

Daddy takes him into the bathroom for P and teeth cleaning while I go into the bedroom and set up the night light and sheets. Some nights I chase him into the bed pinching his little butt while he laughs and swats my hands away. He throws himself into the bed laughing hysterically, so much so his lips turn blue.

“Johnny stop laughing so hard, your lips are blue, breathe!” as Kevin and I look at each other nodding our heads with the look of “Wow, can you believe this kid”.

Kevin and I lay in the bed with John between us. We laugh at the silliness of John and usually mention how handsome or grown up he looks. Tonight, we mentioned how straight his teeth are and how beautiful his smile is. He has Kevin’s teeth, I had braces.

We say the Our Father Prayer with Kevin’s hand across us both. Tonight, Kevin was rubbing my back. John took Kevin’s hand and moved it away and began rubbing my back himself. We all laughed and kissed good night.

Sobriety brought me here….I am forever grateful for these moments that I do not rush and adore so much.

However, sometimes my mind goes to a dark place. For literally a second, my mind imagines the space between Kevin and I in that bed empty, without John. It gives me a knot in my stomach with a weakness I cannot explain. I shake it off quickly.

Death is something I think of a lot. I don’t do it on purpose. My mind just goes there. Sometimes I wonder if it’s my brain preparing me for the “what ifs”. But, my smarter brain tells me not to think of the ‘what ifs’ and to live in the present. I am not sure how to make these thoughts stop. I feel like it’s a symptom of medical PTSD, from all the years of watching him almost die or struggle to breathe.

I just don’t know how to make it stop…

I can’t deny…

Six years ago I was asked to write about the positive aspects of raising a child with complex medical issues. This is the article I wrote that was published on an online magazine called Complex Child.

http://complexchild.org/articles/2011-articles/october/extraordinary-little-man/

Looking back at this article reminds me of how far John has come. Day to day life can get me wrapped up in rushing, taking on too much and wishing John was doing better medically. I get wrapped up in the future instead of living in the present. I literally give myself anxiety thinking of scenarios that can happen if things were different. Things that probably will never happen consume my thoughts during the day.

Before I seen this on my memories news feed via Facebook I was talking to a friend about how negative my thoughts have been. Re-reading this was a blessing. A reminder telling me to STOP, breathe and smell the flowers right in front of me. Find the gratitude in the life I have today, full of oxygen tanks, bowling, Chuck E Cheese and all beef kosher hot dogs. Find the gratitude in the people around me today. The teacher that never gave up on him, the lunch lady that showed up to his birthday party and the students that sent him cards at the hospital! Be grateful for the party invites even if we can’t go, the friends that call to check in even if I can’t answer and our chosen family.

I cannot Deny  Autism, Chronic Lung Disease or Epilepsy. It will always be a part of our lives, but I will not let it control my thoughts!

What a great way to restart my week!

 

Daily Prompt: Sympathy (Keep it!)

Sympathy

Sympathy: caring and understanding for the suffering of other

Don’t tell me you have sympathy for me as a mother who has saved her child’s life a hand full of times. Don’t tell me you have sympathy for me when you hear I gave him CPR today or we made it through another seizure.

Don’t tell me how you could never do what I do.

You cannot imagine my feelings or what is going through my head while I gave him CPR – How I cried and prayed he wouldn’t die in my hands. How I screamed for the paramedics to hurry up. You cannot imagine how I felt.

I hope you never know how it felt.

Keep your sympathy, give me your heart. Give me your silence so I know you are listening. Give me your time so I know you care. Give me your prayers so I know you love me. Give me your patience when I don’t return your calls. Give me your love when I am angry.

But please don’t give me your sympathy.

Daily Prompt: Elevate

via Daily Prompt: Elevate

Elevate

When I think of the word elevate I can break it down by my life’s era’s.

In the 80’s, this child could elevate into tantrums and anger in a split second.

In the 90’s, this business woman would elevate an issue to a manager if I wasn’t getting what I wanted.

In 2005, this mother elevated issues to Doctors and Nurse Practitioners if my son wasn’t receiving the care he needed.

In 2010, this woman’s life was elevated to a state of chaos, so badly I needed a program!

In 2017, when I hear the word elevate I think of elevating over my body in a state of meditation and peace of mind.

It’s amazing how life’s perspective changes over the years as we grow emotionally.

I hope I always remain teachable.

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!!!

 

 

Daily Prompt: A Casual Mom

I have no fancy dresses in my closet. If I received an invitation to a black tie event or wedding I would need to go out and buy something. I have summer dress, jeans, shorts and tanks. I wear underwear with super heroes on them or the cookie monster. I wear sweatshirts over my tanks in the winter because I still sweat a lot. I recently decided to let my gray hair grow free.  I now have long hair that is gray and I love it! I wear jean shorts, leggings and yoga pants, no yoga though! I am always comfortable.

I wasn’t always like this. 12 years ago I had a baby boy, Baby boy Murphy is what they called him in the Intensive Care Unit (ICU) of Children’s Memorial Hospital, now called Robert and Ann Lurie’s Children’s Hospital. He was born with a right-sided Congenital Diaphragmatic Hernia. This is where his liver and bowels grew up where his lungs should have been causing him to be born with partial lungs. He spent 13 months in the ICU after birth, 8 years on a ventilator and 9 years with a tracheostomy. He has Epilepsy since the age of 2. His first seizure lasted 8 hours and only stopped because he received a sedative cocktail that would knock an elephant out. He also has Autism and Sensory Processing Disorder.

His story is long, tragic and beautiful. He is a lot of work and somedays just amazing to be around. I can barely take a shower for more than 10 minutes at a time while we are home alone because he has no sense of danger. I am scared he will walk out of the house or set fire to it.

This morning I pulled out a summer dress because I didn’t have time to do laundry. After envisioning the day which consist of a trip to Chuck E Cheese (because he earned it), a picnic and a festival (if we survive the picnic) I decided to put my knee length yoga pants on, they make my calves look awesome! That summer dress would have tripped me up if I had to make a runner after the little man.

Happy to be casual, working from home, entrepreneur mama ❤

via Daily Prompt: Casual