Happy Birthday Michael!

Michael’s 19th birthday is this Sunday, August 1st. I ask myself, as each parent does every year on their child’s birthday, “Where does the time go?” Yet for me that question takes on altered meaning when some days it’s as if I can actually hear the minutes ticking away without my fun-loving Michael.

Ever since Michael went to heaven in 2005, I haven't planned an August birthday party. But with strength greater than my own, I still choose to celebrate one of the happiest days of my life; the day Michael was born.

So come with me now down memory lane.....

It was the usual heat of summer and I was on my fourth week of bed rest with Michael tucked safely inside of me. Jessica could finally take a break from her daily announcement to who ever was in ear shot of “Mom’s throwing up again”. That daily ritual was now being replaced by very high blood pressure giving way to total bed rest, joining the previous condition of Placenta Previa which was diagnosed early on in my pregnancy. You can about imagine how much fun I was having with all that by the eight month of my summer pregnancy! Not to mention the very cute three year old blonde toddler girl that was also looking for her own summer of fun. None the less I loved being a Mother and the idea of another baby joining our family in spite of this kind of pregnancy was still exciting. I absolutely adore babies and everything about them.

It was suppose to be a typical follow up OB appointment on August 1, 1991 which in my case included a repeat ultrasound. It was the same type of appointment I had been having the last four weeks since the bed rest began. My husband had been coming with me to the other appointments but this week I insisted that I was just fine going myself. To make a very long story short, my appointment on August 1st did not go the way I expected and it definitely took us all by surprise. Early that afternoon, a little baby boy named Michael was born emergency C-section at Fairview Ridges Hospital in Burnsville after complications were found during the ultrasound that morning.

Michael was small but perfect complete with ten fingers and ten toes. Even on day one he stunned the emergency team of doctors on stand-by who were anticipating a newborn transfer to Children’s Hospital in Minneapolis. Michael was doing fine and a transfer was never needed. That day was the first time we met our wonderful pediatrician, Dr Baker. Years later he admitted to me that Michael was one of the first patients he saw as a new doctor on call that day.

It was the beginning of a life for our family that would change us forever. I see now all the seeds that were planted in that birth experience, gracefully preparing us for what lied ahead. Once again I was humbled and blessed beyond the capacity of my earthly imagination. I thought I was going to teach my son everything he needed to know about life but instead he taught me.

Happy Birthday Michael!! Until we meet again one day I will continue what you started; Be the Change.

What do you do?

It seems as if I have been asked the question, "What do you do?" a lot lately.

Therefore, in my blog today, I want to more clearly define what I hope to do through Be the Change. Who knows, might even be helpful for myself!

In my efforts with Be the Change, I want to identify simple yet effective ways to reshape and strengthen the relationship between patient, family and medical providers. By it, creating a more real and honest exchange of information, with the patient at the center, improving the way health care is received and delivered everyday. I believe this is possible by making patient perspective additions to education, training and day to day operations which involve all medical staff from housekeeping to CEO.

This can be accomplished in a number of ways, but I think it begins with our own patient and family health care experiences. These valuable, hard-earned lessons gleaned from personal interactions with health care providers, are the heart of what is considered the patient perspective and should be integrated into health care curriculum and processes. It then has the ability to affect how health care providers are currently being taught to care for patients and family’s, which in my opinion is far too clinical.

Be the Change wants to go beyond just talking about being the change. The last few months I have seen the importance of Be the Change talks and presentations and consider them to be a very valuable asset. However, I desire to make a long lasting change in the medical community regarding the way patients, family’s and providers communicate. I have come to realize that the value of the patient perspective needs to be in print in addition to a verbal presence in order to accomplish that long lasting affect.

Through Be the Change and the patient perspective, the human experience will hold equal value to the medical experience. The whole family will be cared for in the way a patient and provider communicate. Patient and provider will hold equal weight in every choice and decision that is made from small decisions such as appointment times to larger ones like surgical options. Be the Change looks forward to the day when a patient knows ALL of the choices that are available in any given situation and not just some times, but every time. ALL the variables will be laid out for an informed decision to be made with patient and provider working together as partners, each bringing their own unique experiences and wisdom into the decision. That is where the best possible outcome will be achieved.

Wow! Be the Change has lots of work to do.

A prompt response please

I was reminded this week of the extreme importance of a prompt response regarding test results and/or a call from a nurse or doctor. Is it too much to ask, especially in this day and age of immediate response technology, that a patient wait more than 24 hours for health information, critical or not?

We as patients need to be direct and crystal clear with our medical providers as to what they mean when they say “I will get back to you”. Does that mean this afternoon, tomorrow, the end of the week or sad to say in some cases, when they get back from vacation? I completely support any medical providers attempt to get adequate rest and relaxation which might include a vacation. We want them to be at their optimum, but not at the expense of patients waiting for a return call wondering about important medical information.

Respect of a medical provider’s time is essential since they have an enormous job to perform. However respect of patient’s time is just as essential. Both roles have enormity to them requiring mutual respect that flows both ways. I am more than willing to respect my nurse and doctor and the time it takes to do their job. However, I am simply asking them to respect me back and the fact that I too perform an important job in my life. We need to come to a place of mutual understanding with regards to the delivery of health care information.

Allow me to give you some hard earned tips for the next time you might be waiting for some information from a nurse or doctor and someone says, “We will get back to you or someone will get back to you”.

-Confirm if the information will be given by a phone call or a letter
-Confirm who will be calling you back and will it be the nurse or the doctor
-Confirm the exact date and approximate time you can expect a call back
-Confirm if the person in charge of your information will be out of the office the next few days and if so will you have to wait for your information while they are out
-Clarify your expectations with your provider and if they can’t meet them ask to be referred to someone who can meet your expectations

It is important to be kind and respectful in your conversation. Make every attempt to keep your voice calm as you are communicating honestly about what you expect to happen. Don’t be afraid to display your humanness in your attempt to obtain the best possible outcome. In my experiences with nurses and doctors it was when I was willing to share a human part of myself that it allowed them to do the same. In being clear and direct about what I considered necessary in a medical as well as a human relationship with my medical providers, I was then able to be not only a patient but also a mother, a wife, etc. The opportunity for a human experience inside the medical one was present allowing both of us, patient and provider, to serve and stay committed to each of our agendas. Through that type of relationship we will raise the bar, improving the quality of health care received and delivered.

It's true that most often we can’t change what happens to us, but we can Be the Change while it’s happening.

My summer vacation

My family is rooted in tradition and our summer vacation is no different.
For fifteen years we have traveled up north for a week of summer fun at a lake side cabin with my brother and his family. For thirteen of those years we went to the same Northern Minnesota lodge, enjoying seven glorious days of fishing, lounging on the beach and starlit campfires.

After Michael went to heaven in 2005 our summer vacation was definitely altered. Even though we continued to go to our same vacation spot, we all felt his absence. The black tire tube used for floating in the water or just sitting on the beach hasn’t been used since. Afternoon campfires even if it was sunny and ninety degrees out, don’t happen any more. No one hears “are you done yet” as Michael waited in the bedroom closet for the girls to change clothes or “why do I have to go to bed earlier than the girls” when his bedtime was before theirs. Those are simply our memories now and a few of the many stories we tell year after year.

The kids were quite the foursome. It was Michael and the girls, one of them his sister, the other two his cousins. Some of their favorites were watching Price is Right in the morning, hanging out all afternoon on the beach, and playing arcade games in the lodge, just to name a few. It was obvious that Michael thought he was the king of summer vacation and the girls were his servants, and in more ways than one, he was.

Two years ago we decided it was time for a change. Much of our life without Michael had to change in order for us to move forward, summer vacation included. We found a new vacation spot for us and all of our memories with Michael. Now, we still pack fishing poles, lawn chairs and enough food to feed a small army, but we also pack a picture of Michael that is placed lovingly in the cabin kitchen where he can still reside as king of our hearts.

Summer vacation 2010 has just come to an end and more great summer vacation memories were added to the collection. Thoughts of beautiful butterflies, walleye fishing, sitting on the beach with my peeps and singing around the camp fire keeps me going this cloudy Monday afternoon.

The importance of and value in relationships is without a doubt, displayed during this week of summer vacation. Somewhere I read that change challenges us to new depths of faith, hope and love. I have experienced those new depths in monumental ways in my journey with Michael but in many other ways too. For example, making the decision to change our vacation spot of thirteen years didn't come easy, but through a loving and respectful relationship with my brother and his family, we were able to remain faithful and hopeful while making the change. Of course some things are not the same but new and wonderful changes have occurred.

In life, even on vacation, we are all challenged in some way to
Be the Change.

Going to a parade

My Fourth of July celebration is rarely complete without a parade, and this year was no exception. The plan was to join my sister and her family for some Cannon Falls parade fun. We were able to enjoy it in spite of the rain, which honestly didn’t seem to affect any parade goers, including myself. The streets were lined with lots of smiling, happy people. The colorful sea of umbrellas and canopies added a delightful new feature to the festivities. As expected, children were seated close to the curbs totally unaffected by the clouds and rain, focusing only on the hopeful anticipation of filling their now empty bags with candy from the parade participants.

The police sirens and the sound of the timed steps of the VFW drill team made me hope we were close to locating my sister. For a second, I thought we might actually be in this parade since the parade sounds were getting closer and closer. I must admit that being in a parade is something I always wanted to do. Naturally, my dream involved being some sort of queen, complete with crown and white gloves, doing the queen wave on the most beautiful float in the parade. Yet in reality, I would be just as happy sitting on the back of an old 1984 pickup truck with a big sign that says, “Be the Change.” I chuckle just thinking about the possibility of handing out candy to excited kids, doing a wave all my own and watching everyone’s face as they turn to the person next to them saying, “What is Be the Change?”

There is nothing quite like a parade. From beginning to end, the sights and sounds along the route take you to a place of sensory euphoria from the music of the marching bands, the click-clack of horses, the loud sirens of various fire engines and the mini-cars that screech as they dart in and out. It provides a thrill and excitement for the young, as well as the young at heart. If you haven’t been to a parade yet this year or haven’t gone to one in many years, let me encourage you to go, especially if you can share the parade experience with young kids. Their enthusiasm at a parade is absolutely contagious -sure to spark some of your own.

Who knows, one day you might see me in a parade with that Be the Change sign. I hope that because of this blog, you will be able to tell the person sitting next to you what Be the Change means. More than likely I won’t be wearing a crown though, not visibly anyway, but I will for sure throw you some candy!

Voting for a new relationship

After hearing the news about the tentative agreement reached last week between MN nurses and hospitals, I must admit that I breathed a sigh of relief. The vision of striking nurses in our metro area isn’t something I wanted to think about. Not only for the nurses who are involved, but for the patients and their family’s who would no doubt be affected by it. I am definitely supportive of what MN nurses have been fighting for, not just now but for many years prior to this. It lends towards everyone’s concerns about the quality and safety of patient care as well as patient/nurse ratio. Since Be the Change desires to develop a new and improved relationship and partnership with hospitals, clinics and nurses, I believe this is the perfect time to do just that and in doing so, many of those concerns would be lessened.

In my opinion, the future of patient care must include an increased involvement of the patient perspective especially in corporate decisions being made. Be the Change wants to pave that new way where the opinions and ideas of patients and their families are just as valued as any highly paid consulting firm. I have often told the doctors and nurses of the clinics and hospitals we have been involved with, that their most qualified consultants are the patients and families sitting in their waiting rooms. They are the ones who experience daily, the patient quality, safety and ratio’s that we hear so much of on the news.

Time and time again we are being told of one horror story after another about safety issues and less than quality care. We hear stories about diagnosis information not being communicated timely and/or accurately. One frustrating story after the next about patients in the hospital who are left with out any care regardless of the many times they press the call button. These along with hundreds of others are examples of what Be the Change wants to impact with the hope of changing future stories. The patient perspective can be a powerful companion to the way nurses, doctors, clinic staff and hospital staff move forward in complete solidarity with a renewed passion for exceptional patient care. The possibilities are endless when we consider using patient’s experiences and weaving them into the commitment of the medical community we place our trust in during our most vulnerable situations. The results of this type of patient-family impact will be enormous. It will automatically increase the human experience, improve the medical experience and here’s the bonus; it can be done financially responsibly.

Be the Change believes the time for a real change is here and now and the MN nurses vote tomorrow on the tentative agreement is just the beginning. Through the efforts of Be the Change, we can develop a new relationship between patients and providers where the patient-family perspective is not just coffee conversation between family and friends. Instead it will become a respected and valued partnership complete with board room support and influence, giving absolutely everyone from patient to CEO the opportunity to Be the Change.

Fourth of July Picnic

Every Fourth of July was the same when I was growing up. We had a big family reunion picnic each year at a campground on Fish Lake in Southern MN. It was formerly known as Camp-A-Huca, back in the good ole days. Some of my fondest memories are from that day.

Picnic tables lined up one after another filled with various salads made to perfection, each family's famous bars and cakes as well as lemonade in glass jars. The smell of hot dogs (or you can call them “hod-dogs” like we do) on a black cast iron grill stuck into the ground. The looks of the grill-master, my Aunt Lillian, as she ignored the continuous screams of “are they done yet?” The anticipation of all the kids as we waited and waited for the perfect swimming time, following the “one hour rule” after you eat, of course. Everyone wondering, who got a new nose plug this year from Ben Franklin’s store? I can still remember, like it was yesterday, my aunts sitting on a concrete divider near the water, claiming to watch us swim. Those memories are sealed in my heart, retrieving them to play over and over again in my mind every Fourth of July. They are still some of the best stories told when my family gets together.

It is yet another example of the importance of family and relationships and the many ways they teach you about life. At the time I thought we were simply having a picnic and going swimming along with the traditional July 4th sun burn that was so bad you thought you might need the industrial size of Noxema (maybe that was just me). When in reality it was more than just a family picnic. It was an opportunity to bond with each other, to share your family's ups and downs, to lend support, to offer advice, to laugh, and just have FUN. Powerful lessons have definitely come from those simple yet great pleasures.

All of these things are components of Be the Change. We will not make changes alone. Real changes will be made from developing relationships in which we share our experiences, offer support and give advice. I am profoundly grateful to all of my family that has taught me the value of a loving, respectful relationship by actually demonstrating it themselves. Be the Change is rooted in those same core values. Be the Change believes that anything is possible when we join forces, respecting the human experience and allowing that to be the foundation we stand on. Including recognizing the truth and wisdom from our past and pulling it into our present.

There are many new and exciting things happening with Be the Change which, especially on Independence Day, makes me aware of how extremely blessed I am. I have the freedom to speak and write about the changes I think are necessary to improve health care. It is a freedom which comes from many who have sacrificed and suffered to provide it. The experiences of people who inspire Be the Change have many similarities to those who fight for freedom. Courage is the first one that comes to mind. Each are demonstrated differently, but the powerful impact of quality relationships and respectful partnerships is the center. It's what we freely experience every Fourth of July and in both great things are possible. Learning, each in our own way, to Be the Change.

So, I got my nose plug on, I promise to wait an hour before I go swimming and I sincerely hope that you have the chance to be with your family this Fourth of July. Try a family picnic, making some memories like mine from Camp-A-Huca. You might want to buy some Noxema though, just in case.