Instincts

By far the most important lesson I have learned over the past eight years is to trust my instincts and those of my children.

I used to believe that doctors knew everything because my personal experiences had always been so positive.  However, when Morgan became critically ill at the age of 3 months all my red flags surfaced and I began to see, feel, and experience the differences between truly outstanding nurses, doctors, and therapists and those that were technically competent but lacked bedside manner.  I learned the hard way to trust my instincts and to listen very carefully to what my daughter was trying to tell me even though she couldn't speak at the time.  I learned to ask a lot of questions and to not accept the status quo.  I learned to do research and ask for second, third, and fourth opinions.  I learned to change nurses, doctors, and therapists when they were not the right fit for Morgan or did not have her best interests at heart.  More importantly, I learned that as her parents we are responsible for making sure that she has the appropriate care - that we are a vital part of her treatment team - and therefore have the ability to determine her best path forward.  Nurses, doctors, and therapists (although extremely educated and well trained) do not know your children like you do.  They do not live with them, nor do they experience first hand the 24 hour challenges associated with your critically ill child, or the constant advocacy required to raise your child with special needs.

The best nurses, doctors, and therapists LISTEN and are open minded.  They listen to your child.  They listen to the parents.  They listen before they speak.  More importantly, their bedside manner is impeccable!They are open to trying new methodologies that they may not be familar with or referring to someone else who does have that knowledge.

There has been a long struggle between eastern and western medicine - traditional and non-traditional -traditional and alternative - traditional and holistic.  Whatever term you choose to use the struggle is real.  Most "traditional" doctors tend to be skeptical of anything "alternative" for which they do not have first hand knowledge.  If it hasn't been extensively researched and written up in all the medical journals then it isn't worth pursuing is the typical feedback that I receive time and again.   I am not suggesting that everything works for everyone.  What I am trying to say is that each child is an individual and may respond differently to different protocals so do not discount an opportunity to explore a combined protocal with the parents.

The first experience we had with this struggle between eastern and western medicine was in the Cardiac Intensive Care Unit at Cincinnati Children's Hospital Medical Center.  Morgan had many cardiologists telling us that her heart was ruined - that she wouldn't survive without a heart transplant, if at all. 

I remember one cardiologist raising his voice to me saying "Do you understand that there is no going back - that her heart is ruined - that it can not recover from the damage, and she may never recover."  I looked him square in the eyes and said "No - no, I do not understand any of this, but what I believe is that Morgan is going to be fine and that she will recover.  What I know in my heart is that she will survive and she will do it without a transplant."  OK - I admit it - at the time I was extremely naive and uneducated about our daughter's conditions - I think - no, I know I was in a constant state of shock - but I was not about to let all that negativity enter my head or her room.  All I knew in that moment was that I loved my child and I was not going to watch her die.  When that particular cardiologist left her room, I knew that he had written me off as crazy but I did not care.  I know he was frustrated because he knew I was relying on the results of her echo every day to show me that here heart was fine and that she no longer needed a transplant.  If I had known then what I know now about her heart condition, maybe I would have acknowledged what he was trying to tell me.  However, when I went from being told I had a healthy baby to your child is in heart failure and may not survive, life as I knew it was over.  Hard as I tried, I could not wrap my head around the concept because no one could tell me why or how this happened.  Nothing made any sense to me so I immediately left what some would call "rationale" thought and replaced it with a what I call a higher level of  thought "protective instinct."  Every ounce of me from that point forward was focused on Morgan's survival.  I often wonder what he would say if he could see Morgan today - heart completely healed without a transplant.

After that incident, my husband and I made a decision that we did not want all of these cardiologists coming and going and that we needed consistency with her care.  We wanted one cardiologist that we trusted to be the lead on her medical team and work with us to help Morgan.  We knew that we had met that cardiologist a few days earlier because he had performed her heart biopsy, so we asked to meet with him.  Dr. Hirsch agreed to officially become her cardiologist but explained that he could not always be present to consult in the CICU.  We were elated with this outcome.  His bedside manner was soothing, compassionate, and he really listened and heard what we said before he spoke.  We shared with him how terrified we were at the prospect of a transplant and begged him to give her more time to heal.  He was not going to put her life in jeopardy, but he did agree to give us the time we needed under 2 conditions: 1- that she continued to breathe on her own versus going back on the ventilator that they had weened her off of - AND 2- that she thrived and continued to gain weight.  We agreed and left his office feeling like a tremendous weight had just been removed from our shoulders.  That was all we needed to hear and I went to work seeking help for Morgan. 

Once released from the hospital, Morgan was exposed to reiki, craniosacral therapy, and numerous other alternative strategies, in addition to utilizing all her traditional doctors.  We shared all the alternative therapies that we were using on Morgan with Dr. Hirsch, her cardiologist, and he said he was not familiar with all of the therapies we were talking about or sharing with him but that they were apparently working for her so to keep it up.  He said that he had never been witness to such remarkable progress.  When her heart fully recovered - without a heart transplant - he said he had to review the echo twice because it was as if she never had a heart condition.  He said he wished he could have taken the credit for her miraculous recovery but that he knew - without a doubt - that God had something to do with it. 

How refreshing - a doctor that did not discourage us from utilizing alternative therapies, in addition to his protocal, and more importantly celebrating her successes with us.  We had achieved the perfect scenario with Morgan's health - eastern and western medicine working hand in hand to work miracles.  This is the best of both worlds because after all of our experiences to date, we firmly believe that we need both in Morgan's on-going protocal.  Morgan's cardiologist, Dr. Hirsch, was her first official hero and we will always be grateful to him for listening, understanding our fears, and working with us to provide her the best combination of care!  He cared for Morgan as if she were his own daughter and she knew it because she always gave him the biggest smiles as a reward!  His bedside manner was and still is impeccable!