The School Nurse

As you can imagine when you have a child with special medical needs, the relationship with the school nurse is extremely important. Not only is she responsible for band aids and Tylenol but also for children with complicated diagnoses. The school nurse took on a big responsibility when Michael was diagnosed with a rare syndrome at age seven. Along with many other tasks, she became my eyes and ears while Michael was at school as well as our trusted friend.

After Michael was diagnosed with SIOD, each school year started with the typical new backpack and crayons but also with a meeting of multiple school staff, particularly the school nurse. I needed to keep her up to date with the progression of the disease and the complicated medication list that changed day by day. Extreme kindness and compassion was consistently displayed by the school nurse time and time again as we stopped by her office to drop off new medication, treatment notes from the doctor or to sign out Michael for doctor appointments. The same was true when I would call to check up on Michael for one reason or another or to discuss the results of an appointment or a surgical procedure. Often she needed to call me, to let me know that Michael was in the nurses office with a headache, leg pain, or something really frightening like a TIA episode. Whatever the situation was our school nurse was always pleasant, calm, kind and loving. She was someone Michael trusted while he was at school and someone I trusted that would be immediately available to him while I was at work. Some days just her smile that greeted us made our morning better. The value of a school nurse goes far beyond what I could describe here in words or even what is listed on the job responsibilities section of her school contract.

Once again it was not just her skills as a nurse that made the years Michael was in school go smoothly but also the relationship that developed between all of us. Michael wanted to go to school and be just like every other kid. Even though he faced many challenges, even though he had to miss many days of school because of his disease and even when he had to go to school the first day in his wheelchair, he just wanted to go to school and be with his friends. The school nurse made that possible by her willingness to not let fear or assumptions stand in the way of a boy who suffered from a rare syndrome yet wanted to attend school and just be “normal” for six hours a day. Great things happened medically and personally as we partnered together year after year in our common goal of keeping Michael in school as much as possible in spite of all of the medical challenges he faced.

The message is the same whether it is the nurse at the doctors office, the nurse at the hospital or the nurse at school. Nursing skills that are laced with kindness and compassion along with a desire to partner with patient and family will always nurture relationships and result in great things. Mother Teresa once said “The needs are great, and none of us, including me, ever do great things. But we can all do small things, with great love, and together we can do something wonderful”. Thank you to all the school nurses who made Michael’s time at school so wonderful.

Forgiveness

I always considered myself a relatively forgiving person. That was until I experienced situations with nurses and doctors in Michael’s health care that made me question my ability and capacity to forgive.

Forgiveness according to the online dictionary is defined as,
“to excuse for a fault or an offense; pardon.
Secondly,to renounce anger or resentment against”.
Each time a fault or offense occurred with Michael someone always apologized but was that enough? Did I really forgive them? Or was I simply forgiving them in words but holding on to anger and resentment that was then reflected in my actions or attitude?

One time there was a nurse in dialysis that accidentally disconnected a hose that caused Michael’s blood to pour out on the floor in front of him and me. An apology was whispered but along with it the comment, “no big deal”. Trust me, it was a big deal to us. Another time, a nurse and resident who didn’t understand the affects of fluid overload in conjunction with Michael’s rare syndrome caused him to stop breathing. A code blue with ten minutes of heroic efforts occurred to get Michael to breathe again as my husband and I watched helplessly. Michael miraculously survived but a two week self induced comma surrounded by tremendous suffering followed. An apology was made but so much physical and emotional damage was done.

Unfortunately I would be able to give many more examples but the examples and details are not what are important here. Painfully, what I learned from these and other situations such as these is that it is not about the words of apology or even the sincerity of the apology but the work that follows. All are vital to how we receive and process an apology and move forward from it. At the time, I felt as if accepting the apology was necessary in order to continue receiving the health care we needed for Michael.I now believe that accepting it appropriately with forgiveness allows for the healing process to happen not just for the patient and family but for the nurse and medical staff as well. It restores what is needed to continue the important work they do with the hope of doing it better than before.

The truth is we all make mistakes and all of us are just trying to learn and grow from them. Unfortunately in health care a mistake can be as monumental as life and death or as minuscule as a scared young boy and his mother. Both are equally important and require an apology; a heart felt, look in the eyes apology that would mend hearts and calm fears but with it, the potential to improve the health care process and its relationships. In that we all are healed and the medical experience as well as the human experience are transformed.

Did I forgive them? Yes, I believe I have especially when I think of how many times I have been forgiven both earthly and spiritually. So the next time you have an undesirable experience with a nurse or doctor remember forgiveness goes both ways and in it you are both healed and changed.

Talking to nurses

This week I had the opportunity to share some of our personal health care experiences with a few nurses from Park Nicollet/Methodist Hospital during a portion of their orientation day called the Family Perspective. I spoke about the impact and influence nurses have on not only the patient but the family. Since the focus for this particular presentation was on the end of life I shared some stories about Michael's last hospitalization and a couple about my Mom.

I felt like it was important to share experiences I had early in my life with nurses that influenced me during my Mom’s seven year cancer journey. To this day, almost thirty years later I haven’t forgotten the loving, nurturing care they provided to my Mom as she battled with cancer and in the way they nurtured me at the same time. Those nurses taught me how to be a strong and effective advocate. They developed a relationship with me that went above and beyond their clinical responsibilities. They recognized that as my Mom was fighting for her life, I was trying to live mine. During those seven years my Mom had cancer, I got my first fulltime job, got married, and had my first baby. Sadly, I also had my first encounters with hospitals, emergency rooms, oncology, surgeons, doctors, and nurses.

Reflecting over my talk to the nurses this week I was reminded once again of the importance of relationships in health care. A nurse is never just caring for a patient but is caring for the whole family. Not an easy task to say the least but one that is vitally important. In the situation with my Mom’s illness I knew that I wanted to be there for her but I also knew that I needed to be other places too. I started making the connection between putting priority to my life and how that spoke into my Mom’s total health and emotional well being. This is why you need nurses to partner with you and understand the importance of the medical experience as well as the human experience. Only then are you able to give equal time and attention to both roles. It is nurses that give you the confidence to feel as if you don’t have to be at the hospital all the time.

This was the same type of mother/child conflict I experienced while caring for Michael. As much as I wanted and/or needed to be with him at the hospital all of the time I also longed to be home with my daughter. Both were deep desires of my heart, and both were equally important. The nurses who took the time to get to know me understood that their proactive and dependable nursing skills would give me the confidence to then make choices that supported my role of Mom to both of my children. The nurse is then caring not only for Michael but for me and my family as well, fostering a human experience inside the medical one.

My hope and prayer as I left the presentation at Park Nicollet this week was that the nurses who just heard my family’s stories are now providing that type of above and beyond nurturing care for some other family right now.

Mother and Nurse

Being a mother is something I don’t take lightly. I dreamed about being a mother, the beautiful children I would have and the life I would give them. Never once in any of those dreams however, were special needs, a wheelchair or being a health care advocate. Nonetheless I am blessed with two beautiful children, and I have tried my best to give them a good life. I myself was abundantly blessed by a wonderful mother. The journey we shared during her seven-year cancer battle in my early twenties taught me many of the skills that I needed during Michael’s illness. Even though she died many years before Michael was born, it was the grace she displayed in the way she lived her life and her end of life that resonated in me during the years we advocated for Michael - that love and service was my compass.

I think it is of the utmost importance that health care providers, especially in this current climate of overworked, understaffed nursing, draw a clear and distinct line between mother and nurse. The role of mother is often defined as a nurse in every day life so it is difficult to navigate in, especially when involved in a long-term health crisis such as ours. Too often in the health care process and primarily with nurses, I was forced to leave my role as Michael’s mother to become proactive mediator and act as some sort of liaison between the multitudes of specialty care. Many times I was in charge of making sure blood draws were consolidated, doctors orders were current and medications were correct. When actually what I should have been doing was simply holding Michael’s hand, calming his fears and assuring him that everything was going to be alright. I was constantly torn between meeting the needs of my son as his mother and bridging the gap between nurse and other medical staff that were either not doing everything they should or not doing what they promised to do.

The family especially the Mother holds an important role as advocate and caregiver for the patient, but it has to be a partnership that exists between family, patient and nurse. If each person maintains their given role, automatically it will provide a good experience for everyone. I will admit that at times being Michael’s mother wasn’t an easy job, but it was filled with life-altering events surrounded by great love, much like the job of nurse. I believe we can enhance the human experience in health care by redefining the relationship and roles of patient to family to provider. This will give any mother who has ever slept in a wooden rocker next to her sick child in the hospital a chance to simply be a mother.

Nurse and friend

There was a nurse at our pediatric clinic that became Michael’s trusted friend as well as being his nurse. All throughout his illness Michael had to endure thousands of blood draws. A blood draw or any kind of needle poke can be a traumatic experience especially for a child but it goes to a whole new level when you have it done to you all the time. It wasn’t until Michael’s rare syndrome was established did we understand that patients with SIOD experience pain ten to a hundred times more intense than the average patient. Often this fact was either ignored or received with judgment and assumptions. This particular nurse at the pediatric clinic however, did whatever she could to lessen the pain for Michael especially by her great skill in doing a blood draw in just one poke. For more then ten years she was the one Michael depended on and trusted which dramatically altered our clinic experiences. Her kind smile and loving intentions along with her skillful techniques brought the human experience into his medical experience. She entered into a relationship with us both, Michael and I that went far beyond the scope of her clinical expertise.

On the other end of the spectrum was an experience we had with a different clinic for a one time appointment to do a diagnostic test. We were told, as the nurse was ready to begin, that this test required an injection followed by a blood draw every half hour for a total of four-six hours. The nurse was quickly frustrated by her inability to draw blood on the first poke which seemed to set the tone for the whole appointment. As well as the complexity of Michael’s underlying symptoms along with his undefined diagnosis appeared to increase her anxiety affecting her abilities. Every half hour Michael usually got more than two pokes depending upon the number of attempts it took for her to draw blood. Michael’s pain and fear grew minute by minute turning into hours of crying, screaming and physical restraining. I was upset and frustrated by so many things but mainly because this necessary yet extremely invasive test being done to my six year old son was not explained to me before we arrived. Michael and I were given no opportunity to prepare or develop coping skills prior to the appointment which could have dramatically changed what happened that day. In my opinion, what made matters even worse was a nurse who made a choice to not have any relationship with us that day even if it was for only one appointment. She put more focus on her work at hand than this scared little boy and his mother who felt like she failed him somehow. We all failed Michael that day; the clinic who didn’t offer any pre-appointment instruction and the nurse who didn’t take the time to understand him. That day I vowed to myself and Michael that something like that would never happen again. We needed something to change.

New Journey

Be the Change had been forming in my mind since the very beginning of Michael’s health crisis, I just didn’t realize it at the time. We faced so many obstacles and challenges that I knew with out a doubt could have been avoided if people who were involved in our health care process would have simply made a choice to see our situation both humanly and medically. A good friend told me once, “We need to bring the human experience back into the medical experience”. I believe that through her, those words were spoken to me divinely and by it a seed was planted. I never forgot those words which seemed to echo in my mind time and time again as we so helplessly watched Michael suffer unnecessarily because of poor choices. Each time I became more aware that a change needed to happen.

Those words spoke to me years ago have now evolved into something that we refer to as Be the Change, trusting and believing that we can affect change by our past experiences. This change to future health care experiences is born out of the pain and suffering of not just Michael but so many others like him due to the actions of health care providers who made choices and decisions that were not centered on the patient and family.

So a new journey begins and the seeds that were planted years ago are beginning to grow. My initial plan is to tell our story, truthfully and humbly, primarily to health care providers and educators. Sadly this time my journey is without my sweet Michael. But in his spirit of love and courage I am going to take all our experiences, both good and bad and use them to redefine the relationship between patients, families and providers reclaiming the human experience in health care. It’s something we all desire; patients, their families and providers alike. We must partner together, respecting each others roles, in an effort to achieve a better way to receive and deliver health care. Our story can be the catalyst to this change offering encouragement to those who have their own story and inspiration to those who also desire a change in health care. All of this because a boy named Michael raised the bar and showed me that anyone can be the change.

Be the Change

Multiple degenerative diseases, kidney transplant, wheelchair, death, divorce, anything else? In the days that followed that January appointment in 1999, my husband and I clung to whatever hope we could find to get us through the day. We thought maybe Michael’s case would be different. Maybe we misunderstood the information. Maybe Michael would experience a miracle. During those initial weeks of anger, sadness, acceptance and then reality it was disappointing to us that no one from the clinic called to follow up. I just assumed that someone would call asking how’s it going, do you have any questions or simply how are you coping with the fact that we just told you that your son has a disease that will most likely end his life in the next few years. Even as we left the appointment that day I remember the only person left in the waiting room was a cleaning lady dusting and arranging the magazines. Although I was fully aware that she was from housekeeping, I had this urge to say to her, can YOU tell me how we are going to get through all of this?

In the years that followed that infamous appointment, those things that we contemplated initially did come true. Michael’s case was very different. Consistently he stumped medical staff by his unique symptoms and rare diagnosis but equally he amazed everyone with his courage, strong will and determination. Everyday we experienced a miracle. Michael himself was the miracle, teaching all of us to love and serve in a whole new way. We became the family who challenged doctors, nurses, clinics, emergency rooms and hospitals to support us not just medically but emotionally, embracing these basic truths. We were a family with a son named Michael who had SIOD. However, first and foremost we were still a family and our son still wanted to be just a boy doing all the things boys do. Often when I looked at Michael's doctors and nurses I thought: You will need to enter into a relationship with us in order to care for us effectively. SIOD will not own us, it will not define us, and it will not break us. We will not be just one more statistic. That truth spoke out loud again, many times, is now the foundation for Be the Change.

The drive home

We drove home from that appointment in complete silence other than the sound of Michael eating his curly fries and roast beef sandwich, which was unusual for us. Michael didn’t like being silent. He loved to talk, ask questions and simply make noise. Typically there was conversation going on about if he could watch TV when we got home, questions about when he should do his homework or the sound of his CD player being too loud. At one point he did ask what the doctors wanted to talk to us about. I remember giving him a quick reply of no worries Michael, no worries and then muttering something like, just more information that will help us take care of you. That response of no worries, no worries became a mantra that I spoke hundreds of times to Michael in the years that followed that appointment. No child should have to worry about all the affects of a rare syndrome; of any disease actually.

Desperately, I was trying to absorb everything we were just told and yet at the same time feeling so frustrated in the way all these life altering facts were blurted out, one after another. Couldn’t there have been a kinder, gentler way to share this type of news with us? Did we need to know all these horrible facts all at once? It was overwhelming. The doctors must have seen the look of complete horror on our faces that day. As if those cruel facts about the disease our son had weren’t enough, the doctors ended the appointment that day with one more fact as a word of caution. Eighty five percent of marriages involved in this type of catastrophic illness result in divorce. Seriously, are you kidding me? Anything else you think you need to reveal to us today?

Looking back I have found value in hearing that final fact on that day. It gave me and my husband the opportunity to commit to each other on a whole new level. Actually, we spoke the following words out loud to each other many, many times. “That will not be us. That will not be our marriage”. I have yet to this day found the value in hearing that harsh statistic about marriages on that particular day though. But, I will admit that I learned the value of speaking the truth out loud.

Michael has SIOD

As the doctors continued their explanation of the diagnosis, I sat staring out a long, narrow window in the exam room watching freezing drizzle roll down the glass. I knew they were talking about my son, but their calculated words and sentences made it seem otherwise. How could this be about my son? The boy I could hear laughing and playing. The same boy who just minutes ago whispered to me asking if we would still have time to stop at Arby’s for supper. But somehow, from that moment to now, I felt like I had stepped outside of my body and was watching this unfold as some kind of bystander.

She went on to say that this was a very rare and complicated syndrome. They didn’t have much information about SIOD but at this time there were approximately 25 reported cases in the world. Often characterized by hyperpig-mented macules (resembles freckles), SIOD typically affects multiple areas of the body, which include but not limited to, slow to no growth, kidney disease, vascular disease, and joint dysfunction. As with the kidney disease, SIOD was progressive. So not only would Michael eventually require a kidney transplant, he would also need a wheelchair for mobility because the joints in his body would progressively degenerate leaving him unable to walk. Making sure I had complete eye contact with her now she paused before she shared the fact that life expectancy for children with SIOD was somewhere between age ten and thirteen. Michael was seven. It was at that moment that the freezing drizzle from the window seemed to penetrate my heart and I knew I wasn’t a bystander any more. It was a defining moment for what I now call Be the Change.