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

 

 

 

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: 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

What’s Next?

It’s been an autistic kind of day…

This morning John refused to talk to me unless we used the walkie-talkies. I enjoy when he does this because it encourages him to use proper sentences and good words. He keeps the volume so low on the walk-talkies that we can’t hear each other. However, we are standing right in front of each other. I believe the sound of the voice through the walkie-talkie causes a sensory issue so he keeps the volume low.

On the way out the door an older man walking a huge old German Shepard was walking by. John started chanting “Fuck, fuck, fuck, fuck…” over and over again. The man stopped and looked at us shocked. I quickly looked at him and said, “I’m sorry, he’s autistic, he’s just nervous”. The man gently said, “I can leave”. I said, “NO, we see you all the time, its ok. He has to be Ok”. All while John was chanting “Fuck”. The man said to John, “Hey John, this is my dog Jake”. John stops chanting and looks in their direction and says, “Jake, like Jake and the Neverland Pirates. Jake, Captain Hook, Mr. Smee, Sharky, Izzy and Skully.” The man responds, “Oh Skully, yeah I like X-Files, too”.  Next run in with Old man and Jake should go a little smoother.

We went to the last day of camp’s talent show at Indy Park. John is so well behaved at Indy it literally has me stumped. I have no clue why. Maybe because he loves it there so much. We spent an hour there listening to the team, greeting everyone and sitting watching the show. It was the quietest he has been all year so I really took advantage of talking to other adults without interruption. It was amazing!

As we were leaving it took everything in me not to cry before we got to the car. John loves this place but cannot attend because of his medical needs. They do not provide nurses and I can’t stay with him. I was sad because Special Olympics starts in September and he will not be there. I was sad because he is missing out on so many things that he loves, where he feels the most comfortable with the friends that make him feel normal and loved.

When we arrived home I let him eat “black” popcorn, didn’t feed him dinner and sat my depressed ass on the sofa. I was emotionally drained from having a good ugly cry in the car on the way home. John asked to go downstairs to play Wii. I was all for it, but didn’t follow him. I wanted to see if he could do it himself this time. He has seen me do it a million times.

I waited…I got lost in my phone…I waited a little more….got lost in my phone a little more and then popped up thinking he was way too quiet. Ill head down to see what’s up.

Scene: Our basement is small so the doors are pocket doors that slide into the wall. The bathroom door was half open with oxygen tubing trailing out. The smell of shit was in the air. I slowly peek in to find a few balls of shit on the floor, a little on the wall, all soaking in a pool of pee with his jeans and underwear laying on the floor soaked. John is sitting on the toilet humming and chanting “what’s next, Mommy?”, the question he has been asking all fucking day, while splashing his feet in the pee.

I managed to get it cleaned up while he sat on the toilet. I was amazed that he didn’t move off the toilet. I think he knew this wasn’t right and just wanted to sit there till it was gone. Kind of like what I want to do when I do something wrong….maybe it will just disappear?

All cleaned up, he jumps on the couch to play his Wii asking “what’s next?”  The bathroom is probably cleaner then when we first bought the house, BONUS!

My character defects like to creep in unintentionally. One of them is impatience and anger. Today, it didn’t’ happen. I only felt sadness. I feel like that is emotional progress…feel the feelings, walk through the fear, and keep the faith….

All day I have been listing off in my head the autistic quality’s that my son has.

The repetitive asking

The swearing

The need for a schedule

The lack of understanding of danger

He is intellectually disabled

He is beautiful, smart and so loving

Whats next blog

This is the face I love every day. It’s the face after the storm, after the hardship and after the madness. It’s the face of love and gratitude. He puts his head on my shoulder while patting my back saying “Gracias, mommy”. While we are just sitting there, after the storm. He puts on a hardy laugh while saying “I love you mommy”, just to see us laugh, after the storm. At bed, he asks one more time “What’s next?”, tonight the answer was “Tomorrow is Saturday, Chuckie Cheese because you earned it!”. He responds. “I earned it!” while his 12 year old body wiggles so hard with excitement.

#GoodNightSweetWorld

And tomorrow we will do it again…

Keep me posted

This afternoon John has a doctor’s appointment with his pulmonary doctor, Dr. Lestrud. He was been following John for 12 years now, since John was born. Our relationship hasn’t always been sunshine and daisies. We have learned having and keeping a doctor is hard, like any relationship.

Back in the day when John was on the vent, oxygen, feeding tube and 13 medications 3X a day I would call Dr. Lestrud my “bad boyfriend”. I needed him in my life, but I wish I didn’t. He never listened to me and doesn’t call me back until I start crying.

It took a few mistakes and steps back for him to start hearing my suggestions. I vividly remember talking to him on the phone one afternoon crying because John was home sick and not improving. I was upset that it took so long for him to call me back. I was upset that the medication he was using wasn’t helping and that he wouldn’t prescribe a steroid to help him. We talked for about 15 minutes, I stopped crying, he apologized for making me feel unimportant and we agreed on a plan moving forward. Which if I remember correctly worked out well. I rarely cried when I called him but this time I had reached a limit. I believe he knew that and took action to make the situation a little easier for us.

Ironically, his wife, who is his 2nd wife, was a nurse in the pediatric intensive care unit (PICU) and took care of John at some point. They have 4 kids together, he has 4 other kids from his first marriage. I often wondered if he was this apologetic as a husband as he was with me that day. But, that would be getting too personal with the doctor.

I’m not saying I was always right. He needed to trust me so he can treat my son and I needed to trust him. There is a balance between what is medically right and what I want. Conversations need to be had, respectfully. I don’t know what medications he needs. But, Dr. Lestrud doesn’t know either unless I can articulate what is happening to John in medical terms, with less emotions. Mom’s with chronically ill kids get a crash course in medical jargon and pick it up quickly.

Over the years I have learned to take the emotion out of my communications. It’s not always easy and I didn’t always do it well. But, I did learn that when I can articulate our needs without crying, name calling or being passive aggressive we get better results. This applies in advocating for education, medical and social needs.

When John first came home from the hospital he was going to at least 5 appointments a month. Every appointment I thought there was going to be some great revelation or milestone. Most cases I was disappointed. Most appointments were the usual nurse’s check in (weigh, temp and blood pressure), sit in the room for almost an hour because they over book, see the doctor for 15 minutes and schedule the next appointment for 3-6 months later.  Eventually we were told to come back in 6 months and that seemed like a milestone. 6month!!! You mean not 3 months???  Yeah!!

Today, we are going to see Dr. Lestrud after 3 months to talk about his oxygen needs. I still think something amazing will come out of this, but deep down the little committee in my head is saying “STOP IT, you know it will be a meet and greet and a “keep me posted on his progress at home” visit.” That’s what I get for knowing my son so well, for advocating for him so well all these years. I get a “keep us posted” from the doctor. (Smile) That sentence seriously gave me butterflies, yes that’s me patting myself on the back, after 12 years. Yes, I am patting myself on the back.

Slow and steady is how we roll

Dr. Lestrud explained what a good wean looks like and we set a plan. Wean the liters from 4 to 3 and see how it goes.  We both agreed we want him to start school in September with or without the oxygen.

Go home and “keep me posted”

ilovebowling
I just wanna bowl!!!!

10 fingers & 10 toes

January 4, 2008 journal entry

Before my son was born all I wanted were ten fingers and ten toes
I asked God to send me the most special child he knows
I never thought about all the rest…
I wanted him to play like little boys do with his tonka toys
Batman shoes, spider webs and blues clues
I wasn’t expecting what was to come
Quickly I learned, with tears in my eyes, what I needed to know
Your child will be broken and slow
Slow to breath, slow to learn, slow to walk, slow to talk
But, not too slow to love
I learned patience and trust in God, I learned about pride and worries
He gave me the beauty of his smile and the love from his heart
I seen his fear, courage and strength through his tears
I was blessed with the miracle of a child
Before my son was born all I wanted were ten fingers and ten toes
I got what I asked for, the most special child God Knows…

April 2005 on ECMO: extracorporeal membrane oxygenation 

Johnny Born

http://emedicine.medscape.com/article/1818617-overview