IN SEARCH OF DR. HOUSE

I was laying with Caden, in his hospital bed, waiting for him to fall asleep. I was watching an episode of "House" when I realized that this was who I needed my little boy to see.  In one hour, with commercials, a man and his team solved a very complicated medical case.  They not only diagnosed the patient, but miraculously healed the near dying, young woman.  All of this in one hour.  Caden has been in the hospital for four weeks.

Now we all know that reality does not work this way but the means by which he and his team reached a diagnosis is feasible.  All you really need is time and a white board.

I know this seems ridiculous but when you think about it, it could work. I often suggest that ALL of Caden's specialists should get together, with Caden, in a room with a white board and marker for one week. They could all spend 24 hours a day watching and getting to know him. They could see, with their own eyes, what I try to describe to them. Symptoms could be written, diagnoses could be discussed and treatments could be suggested. As with a jury, they could could work towards reaching a verdict. One that could hopefully help my son thrive and improve his overall quality of life.

I am disappointed in the medical profession as a whole and I know I am not alone.  I realize that much of what takes place is dictated by insurance companies, policies and law, but the lack of the personal side of getting to know the patient is what is most upsetting. So I guess, a Dr. House with a heart would be ideal.

On an outpatient basis, Caden sees his various specialists three to four times a year.  When we arrive at an appointment, it can take up to three hours before we are even seen.  This is unacceptable, especially when the patient is a child.  With children like Caden, who are complex and often see three or four doctors in one day, it becomes impossible and we're often left cancelling appointments we have waited so long to get in to.

Yes, I have been know to cause a scene at times.  I am proud to make my opinions known to others "patiently" waiting that I am unhappy with the lack of respect towards my son.  I have even been prompted to wait in another room so as to not cause an uproaring of angry mother's.

So after waiting for an absurd amount of time to see a doctor, we are transitioned to a little room that is supposed to be comforting to a child. We continue to sit as we wait for the nurse to come in.  She comes in, asks us a bunch of questions that we know we will have to answer again for the doctor, and types away on the computer.  Eventually the doctor comes in, asks the same questions, types more into the computer, yells at me for talking too fast saying he can't keep up with his typing, takes a few minutes to look at Caden and then comes up with suggestions as to what to do next. Usually these suggestions are nothing more than bandaids to temporarily hold Caden over until the next visit. Medications are prescribed and we are making our way towards the door.

So for about fifteen minutes, four times a year for a total of approximately one hour, his doctor is hands on with my son.  That is too little an amount of time spent on a healthy child, let alone a medically complex, chronically ill, medical unicorn.  

On top of this, doctors are so specialized that they only look at their "piece of the puzzle" and I often feel, at least in Caden's case, that if their piece doesn't neatly fit into solving the puzzle, they pass the buck onto some other specialty.  It is as if taking the time to work with the other specialists to put the puzzle together is way to time consuming and not worth the effort.

This is where diagnostics come in.  Caden is part of what's called Integrated Care, also known as Complex Care and Diagnostics.  It is a fairly new specialty because twenty years ago most children like Caden did not survive past infancy.  The responsibility of the diagnostician is to take all of the information gathered by the specialists and try to tie it all together.  When Caden is inpatient, they coordinate all of Caden's services, tests and care.  I understand it is not an easy task, but as problem solvers they should want to rise to the occasion.

Caden's current diagnostics team and his neurosurgeon are on board with my diagnostic theory.  This took some convincing along with ruling out many other possible diagnoses.  The problems now lies in how to test for the possible diagnoses and if confirmed how to treat a child as young and small as Caden.

His current hospital does not feel they have the means to properly address Caden's issues and are now reaching out to doctors across the country. So, what next....

First, we need to get Caden home.  Because I am pushing to take him off TPN before going home, this will delay his discharge.  Caden will most likely be hospitalized for at least another week.

Then, we have the task of finding a doctor somewhere who feels he has the ability to meet Caden's medical needs.  We will search for a pediatric doctor who specializes in Ehlers-Danlos and other connective tissue disorders.  This doctor, depending on his specialty, would then need to direct us to someone who could possibly treat Caden's symptoms and/or condition.  

Now, in a perfect world, these doctors would all be in the same hospital, located within walking distance of our house.  In reality, these doctors are all over the country.  I expect in the next few months we could be traveling to several of the following states: Ohio, Illinois, Tennessee, New York, Delaware, Utah, Maryland and Washington.  These are the states with doctors who may be able to help our son.  Of course, we will not go to all and hope to stay as close to home as possible, but we need to do what's best for Caden no matter where the road may take us.

Somewhere, out there, is the real Dr. House; one with compassion and understanding.  That certain someone who has an answer and has a way to help our little boy.  We will never stop trying. We will never stop searching.  But we will always weigh the value of childhood and the happiness and innocence that comes with it.  Caden will tell us when he's had enough.  I know he will. And if that day comes, we will honor his wish.