Thursday, May 29, 2014

Jack's Journey - The Early Years Part III


After three months in the Pediatric Intensive Care Unit (PICU) and a third failed extubation, I resigned myself to the fact that the only way Jack was ever going to get home was with a trach. Shortly after they reintubated Jack, I conceded and said “okay” to the trach. Fearing I might change my mind, the PICU staff couldn’t get the consent prepared fast enough. Later in the day, I saw Jack’s cardiothoracic surgeon in the hallway and when I told him I signed the damn consent, he just smiled.

Surgery for the trach was several days later. After Jack came out of surgery, I was standing at his bedside just trying to take it all in when one of the PICU fellows came over. I commented to her that I’m sure they were glad that I finally agreed to the trach. Her response is something that I’ll never forget. She said, “You haven’t made one wrong decision regarding Jack.” It meant a lot to me that she understood how difficult a decision it was for me to agree to the trach and that she was compassionate enough to validate my decision-making process. Although I never saw her again, I still remember her name after all these years. 

day of trach surgery


The day of Jack’s trach surgery was also the day of Mary’s kindergarten graduation. Jack was out of surgery about an hour before I had to leave to get to Mary’s school. I didn’t have time to dwell on all that had transpired that day because I had to suck it up, put on my happy face and do my best to be present for Mary. I’m sure it was the first of many times after Jack was born when I fell short in the “being present for Mary” department.

 my beautiful kindergarten graduate



Jack remained in the PICU following his trach surgery. We spent the next few weeks mostly learning how to suction him. We had to do at least one trach change before we could take him home, which I eventually did, although it’s not something that I have any recollection of. The PICU intensivist asked whether I wanted to do an overnight in the hospital with Jack before we took him home. My answer was an unequivocal “No!” I was sick of hospitals and the last thing I wanted to do was spend the night in one. I knew that Jack would have nursing at home, so I didn’t feel compelled to participate in a trial run on my own. Thankfully, they never pushed the issue with me.

Because Jack was coming home on a vent, someone had to manage him and his vent after he left the hospital. At St. Louis Children’s, a pulmonologist typically follows kids on vents.  I was asked who I wanted to follow Jack.  Over the course of the many months that Jack was in the PICU, I had encountered all of the pulmonology attendings and there wasn’t one that I particularly cared for and there were a few I flat out didn’t like.  My answer to the question of which pulmonologist did I want to follow Jack was “none of them”. Now what? I was given the name of a pulmonologist who managed a lot of vent kids, but she worked out of a different hospital.  I called her office and was told she wasn’t taking any new patients. Strike two. Apparently, the PICU staff knew I was serious when I said I didn’t want any of their pulmonologists to follow Jack because one morning, one of the PICU intensivists came up to me and said that he would follow Jack on the vent if I wanted him to. He told me that he would enlist one of the PICU fellows and together they would manage Jack’s vent. It was unconventional, but I jumped at the offer. To this day, I don’t know why this particular intensivist offered to manage Jack’s vent, but I can tell you that fifteen years later, this same physician spoke at Jack’s funeral.

Jack’s remaining days in the PICU were spent weaning him off the vent during the day, re-introducing him to the bottle now that there wasn’t a tube down his throat, and sessions with physical and occupational therapy.

hospital PT

On the home front, we worked on getting nursing set up and all his durable medical equipment and supplies ordered and delivered. The day the home (portable) ventilator was delivered to the house, I had to be there so that the respiratory therapist with our equipment company could give me an orientation on the workings of the vent. I remember trying to listen to the guy with tears rolling down my face. I so did not want to do this! I don’t think I heard much of what he had to say.  

The week before Jack’s discharge, a woman showed up at Jack’s bedside in the PICU and introduced herself as the nurse manger for the agency that would be providing nursing care for Jack after his discharge. I was so overwhelmed with the fact that my kid had a trach and was hooked to a machine that I didn’t really pay much attention to what she had to say. I think I just stared at her the whole time with a shell-shocked look on my face. My past experience with nursing when Jack was discharged with only CPAP was not a positive one, but I knew this time around, I could not go it alone.

Whether I was ready or not, Jack’s discharge date was scheduled for Tuesday, June 8, 1999. I booked flights for me to fly the girls out to Phoenix the weekend before Jack was to come home. I thought it would be easier if the girls weren’t underfoot while we tried to adjust to the insanity that was about to take over our house. A few days before we were to fly to Phoenix, I was feeding Jack his bottle and I noticed that there was formula leaking out around his trach. I pointed it out to the nurses, a dye test was ordered and sure enough, Jack was aspirating his formula. Knowing that Jack’s discharge date was less than a week away, they scheduled Jack for g-tube surgery immediately. I was in Phoenix the day of the surgery and it was the only time that I wasn’t with Jack for surgery or a procedure.

Discharge day arrived and the mood in the PICU was almost party-like. I’m not sure if they were happy that Jack was finally going home or if they were just glad to finally be rid of me! Pictures were taken and notes were written in a memory book.  

 discharge day

one of Jack's primary nurses came in on her day off to say good-bye

sporting the hat given to him by Dr. Garcia - the PICU fellow who 
was going to follow Jack on the vent at home

Jack and Dr. Garcia


We loaded Jack and several carts full of his stuff in the car and drove away from what had been Jack and my home for most of the last six months. Jack was discharged on trach collar only. No ventilator (or nurse) accompanied us in the car on the way home. We arrived to an empty house with a ventilator that I had no idea how to use sitting on a cart in our living room next to Jack’s crib.

the car ride home


About an hour after we arrived home with this child we didn’t have any clue what to do with, the same nurse who introduced herself at the hospital a few weeks prior, knocked on my door. She took one look at Jack and knew he was having trouble breathing. I, on the other hand, was clueless. She hooked him up to the ventilator and the pulse-ox. I, again - clueless. 

Jack hooked up to his "portable" ventilator and pulse-ox. 
Can you say "overwhelming"?

The nurse stayed until later that evening when another nurse showed up to take over for her. The night nurse was confident, talkative and very much “in charge”. She also happened to be the owner of the nursing agency. She was a former Cardiac PICU nurse at St. Louis Children’s Hospital who decided to open her own nursing agency. She was smart, funny and a bit manic and she and I immediately clicked. She worked almost all my night shifts during Jack’s first month home and I often stayed up into the wee hours of the morning just talking with her. All the nurses who worked Jack’s case were an invaluable source of training, information and support to me.

Jack and his nurse Holly

The first summer home with Jack was a huge learning curve, but I eventually became comfortable with the vent, the trach, the pulse-ox, the g-tube and all things Jack. There were many emails and phone calls exchanged with the PICU intensivist and fellow who were following Jack on his vent. I've saved almost all of the emails between Jack’s doctors and me over the last fifteen years, including the first email I sent to the PICU intensivist with an update on Jack. His response:

Thanks for the update. I’m glad he’s doing well overall. Of course babies change and events happen, but when we send home an infant on a ventilator and he/she is able to stay home for the first few weeks, ie, they don’t need to be readmitted for some emergency right away, we feel this is a good sign. Go Jack go!

 our first summer home with Jack pics





Jack made it through the entire summer before we found ourselves back in the PICU. This time for reasons other than respiratory.  

Stay tuned.

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I realize these early years posts are ridiculously detailed and, therefore, long. But, the fact is I remember so many minute details of much of Jack's life. I guess that's why we were so connected. I think the further out we get from Jack's first year, the less detail I'll have to share. In the meantime, bear with me and thanks for reading. 

Sunday, May 18, 2014

My Truth

It's been said that writing is storytelling that connects people through telling one's truth. So, I write what has been foremost in my mind lately. It's not exactly an uplifting piece, but it's my story. My truth.

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As I held Jack in my arms during his final hours, all I could say to him over and over again was "I'm Sorry".

Since that day, I've thought a lot about what I'm sorry for.

I'm sorry he was born with such an unforgiving disease.

I'm sorry he was hurting and he couldn't tell me where it hurt or how it felt.

I'm sorry I couldn't stop the pain.

I'm sorry I couldn't make him better.

I'm sorry I couldn't find doctors who could make him better.

I'm sorry for all the things he tried to tell me and I didn't understand.

I'm sorry for those times I wasn't as patient and gentle with him as I could have been.

I'm sorry I went to work and didn't stay home with him those last months of his life.

I'm sorry I didn't spend every night sleeping with him during his final months.

I'm sorry I didn't crawl into bed with him at Ryan House and hold him every second of his final days.

I was sorry I left his side at all during his final days.

I'm sorry I didn't talk to him more his last day.

I'm sorry I didn't touch him more his last day.

I'm sorry I didn't know it was going to be his last day.

But, despite all the things I'm sorry for,

I can say with certainty what I'm not sorry for.

I'm not sorry that January 5th was his last day because ...

I'm not sorry that he is no longer hurting.

I'm not sorry that he is in his heavenly home and experiencing the joy of eternal life.

I'm not sorry he is finally free.

I miss him. I ache for him. I cry for him. Every single day.

But, I'm not sorry he is finally free.

ONWARD.

Wednesday, May 07, 2014

Ryan House Speech

The words of my speech for the 2014 Ryan House Community Breakfast:

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Good morning. It’s an honor to share with you our family’s Ryan House story.

My husband, Mark and I are the parents of four children. Our third child – our son Jack, was born with a rare form of muscular dystrophy. Because of his disease, Jack suffered from severe muscle weakness that caused him to need a tracheostomy and the assistance of a ventilator to help him breathe. Jack was unable to walk or talk, he was fed through a feeding tube and he was dependent on others in every aspect of his life. 

Our family has been a Ryan House family since the day it opened its doors. I first heard about Ryan House about five or six years before it opened from an article that was published in the Arizona Republic. At that time, Jack was six years old and based on my own experience as the parent of a child with complex medical needs and in knowing other parents of medically complex children, I understood firsthand the importance and tremendous need for respite.

Although he may not remember, I sent Jonathan Cottor an email after reading the Arizona Republic article and Jonathan called me and we talked on the phone about what he and Holly envisioned for Ryan House. I was so impressed with Jonathan and Holly and their vision and anxiously awaited the day that Ryan House would become a reality.

On March 27, 2010, our family was there when Ryan House opened its doors for its Open House. Two weeks later, we spent our first weekend at Ryan House. One of the things that really stood out to me that first weekend was that the staff repeatedly asked “What can we do for Jack?” and “What can we do for you?” It was unfamiliar to me to entrust my child’s care to someone else and have them actually ask ME what was important to me and my son.  Before Ryan House, the only time Jack was in the care of others outside of our home was when he was in the hospital – which is not a place where a parent’s voice is often heard.

The kindness and compassion of the Ryan House staff that weekend and every weekend thereafter was a blessing to this weary parent. Over the last three – almost four years, Jack spent many weekends at Ryan House. There were weekends when my husband and I and Jack’s younger brother, Eric would stay at the house.  Most times, though, just I would stay at Ryan House with Jack and enjoy the peacefulness of the family suite. I treasured the uninterrupted nights of sleep, while Jack was in the caring and competent hands of the Ryan House nurses. There were also weekends when we’d leave Jack at Ryan House and travel out of town with our other children.  Ryan House allowed us to spend quality time with our other kids, who often had to take a back seat to Jack’s intense medical needs.

The Ryan House staff came to know and love Jack over the years. Even though Jack couldn’t talk, he communicated with his eyes and his smile.  One of Jack’s favorite things to do was listen to music and, thanks to his dad’s influence, Jack loved to listen to the Beatles. When Jack stayed at Ryan House, the staff always had the Beatles playing on the iPad for him.  Even the music therapist, Danielle, would play Beatles songs for him on her harp. Jack loved it!

The Ryan House staff and volunteers embraced Jack and they embraced our family. Ryan House became a safe haven we could retreat to . . .  a place where we all felt loved and well cared for.

Last year, Jack’s health began to decline and, in September, we transitioned him to hospice care.

The first weekend in January of this year, we brought Jack to Ryan House with the intention of staying just a few days while we worked on getting a pain management plan in place. Unfortunately, things didn’t go as planned and, on Sunday, January 5, 2014, our sweet Jack passed away in the Sanctuary Room at Ryan House as I held him in my arms, with his dad, sisters, brother, grandfather, aunts, uncles, cousins, and friends surrounding him.

I believe with all my heart that Jack made the decision to make his final journey home that weekend while at Ryan House because he knew Ryan House was the best place for his family to be during his final days and after he left us. The care, compassion and patience that was extended to Jack, to me and to our entire family that weekend truly carried us through the most difficult and painful experience of our lives.

It seemed only right that the people who had brought so much rest and comfort to our family over the last three years, were there to comfort us as we said good-bye to our son. I will be forever grateful to Ryan House for all they did for Jack and for our family during Jack’s final days. 

After Jack died, I received a letter from one of the Ryan House volunteers, who was affectionately known as “Grandma Bev”. I’d like to share with you what she wrote:

“Jack was my first child to care for as a Ryan House volunteer.  I can’t explain it, but someway, somehow, our hearts, spirits and souls touched. His smile melted me and I was hypnotized by his beautiful eyes. I read many books to him and he would make ME so happy, when I was trying to make HIM happy.  One day, we went into the Sanctuary room and I turned on the player piano and asked him if he would dance with me. He gave me that endearing smile and we danced every dance we could! I thank God for giving you both such an amazing child to raise. I thank you both for loving and raising him so well and I thank Jack for teaching me so much about love and life.”

Families like mine need Ryan House volunteers like Grandma Bev - and all the volunteers who give of their time and their hearts to our children. Families like mine need Ryan House nurses like Melissa, April, Amanda, and Rachel, and CNAs like Kasha who possess the understanding and compassion that allows us to confidently surrender our child’s care to them.

Families like mine NEED Ryan House.

Over the last 15 years, our family has been touched by many wonderful organizations that help children with special health care needs, but no organization has supported or touched our family more than Ryan House.

So, in closing, I want to say “THANK YOU” to Jonathan and Holly Cottor for your vision, to the Ryan House staff for your care and compassion, and to all of you who make the gift of Ryan House possible because of your love, your time and your financial support. 

Sunday, May 04, 2014

Inching Onward

He's been gone four months.  Why does it feel like it's been an eternity? I've been told more than once that grief is a process. A process is defined as "a systematic series of actions directed to some end." Does grief ever really come to an end? Life is a process. Grief is an inevitable part of this process called life. I suppose what people are trying to tell me is that grief doesn't occupy a fixed set of time with a beginning and an end. One's grief ends only when one's life ends. Some days it's overwhelming and some days it's bearable. But, it will always be.

Understandably, I do better when I'm away from what holds the most memories of Jack. The hardest place for me to be is home. But, I can't escape out of town every weekend, so I've got to learn how to be home and be okay. I've just now gotten to where I can sit down in the family room and turn on the television. Television and Jack go hand in hand because it's what he enjoyed most. I don't sit for very long, but at least I'm sitting down with the television on. I don't know if I'll ever be able to watch another Disney movie again, though. I've heard good things about the movie, Frozen, but Mark and I can't bring ourselves to buy it because Jack is not here to watch it with us. 

I'm finally able to spend some time in Jack's room. Jack's room is the master bedroom on the first floor and I'm forcing myself to carry the clean clothes from the laundry room into Jack's room where I'll fold them on his bed. I need to make myself spend time in Jack's empty room because maybe, just maybe, one day I'll be able to feel Jack's presence surround me there. 

I've also been able to go through Jack's clothes. Jack's neurologist offered to have her sister make me a blanket out of Jack's shirts and other special items of clothing. Unfortunately, I got rid of many of my favorite shirts of his over the years because he outgrew them. (Silly me, I should have known that I was going to need those shirts for a memory blanket one day!)  I gave what I could bear to part with to Jack's neurologist when I saw her last month. I still have the pair of pants that Jack wore his last day, I can't give those up or even wash them. They are the only thing I have left that holds Jack's scent. I have them tucked away under the pillows on his bed and I'll pull them out and hold them close to my face when I need to feel Jack close to me. 

This weekend, I took the monumental step of giving away most of Jack's vent, trach and feeding supplies. I gave them to a family who lives near me and whose daughter also suffers from a muscular dystrophy and is on the same vent as Jack was. I kept some supplies because I'm just not ready to let everything go. It took me years to accept so much of what was necessary to keep Jack alive and it might just take me years to let it all go.

Next weekend we have an appointment to finalize the design of Jack's headstone and get it ordered. Having only a temporary marker doesn't feel right, it feels unfinished. We just need to get it done.

When you have a child with special/medical needs, you often measure their progress in terms of what we refer to as "inchstones".  When you lose that child, I think it's fair to say that you can measure your own progress forward on the grief journey in terms of inches. I've achieved a few of my own inchstones this last month. I can only hope that Jack is as proud of me and my inchstones as I was of him and his.

I miss him. I ache for him. I cry for him. But, as difficult as it is, I'm ...

Inching Onward.



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As you may recall, my friend Eric wrote a poem about Jack after he died. Eric recently published a collected work of his poetry spanning the years 1995 through 2014. I ordered the book and my copy arrived yesterday. I was incredibly touched to read that several of Eric's poems were inspired by Jack, namely: "Jack", "Brave", "Good Tidings", "Carry On" and "One More Minute". Eric is an incredible and selfless father to his disabled son, Segev and he is a gifted and beautiful writer. I encourage you to order Eric's book here. You won't be disappointed.