Samuel Jerome and Richnightder

Samuel Jerome and Richnightder
Our boys in Haiti

Thursday, September 29, 2011

Nothing is ever easy or simple

My eye is even more lovely than it was yesterday.  The lower eyelid is swollen significantly and has now moved low enough to encompass the entire under eye area.  Yep, it's one fine looking mess.  I head to the opthamologist today at 4 and am hoping he tells me it something simple to take care of and not some rare, exotic, deadly disease.  See.  I'm just a LOT of a hypochondriac.

Thomas and his knee are causing us a little bit of a logistical headache.  When I phoned the orthopedic clinic yesterday, I explained that the pediatrician wanted him to be seen  by an orthopedic surgeon due to her suspicions of a torn cruciate and/or meniscus.  The young man taking my phone call told me there was an opening with Dr. XYZ on Tuesday at 10AM.  Great, and I took the appointment.  Today I got on the computer to have a little looksie at whom I was entrusting my son's future mobility to, and was shocked to find out that the 'Dr.' was actually a nurse practitioner.  Now I have nothing against a nurse practitioner and have actually chosen to see one as my primary in the past.  However, when I request a doctor, I expect to be given an appointment with a doctor and not a close second. 

Thomas also carries the Sickle Cell Trait which is half the genetic component of Sickle Cell Disease.  Having Sickle Cell Trait is fairly inconsequential in daily life and is only really important during extreme heat and exercise, high altitude hiking, and of course procreation....but that's a ways down the road yet!  The most critical aspect of SC Trait is knowing this and relaying the information to a doctor before surgery.  SC Trait means that half of his red blood cells do not carry oxygen efficiently through his body and this affects the way he handles and processes anaesthesia.  This was very carefully explained to me by the pediatric anaesthesiologist at Emanuel Children's Hospital in Portland when Thomas had emergency life saving  surgery at 9 months of age.  The anesthesiologist was emphatic that Marc and I understand this and to always impart this knowledge with doctors before surgery.

When Thomas needed surgery soon after we moved to Bismarck, I shared my concern that he have an anesthesiologist familiar with SC Trait kids.  The doctors reaction left me cold and Marc, Thomas and I left his office immediately.  The doctor scoffed at my worries and told me that putting them to sleep was always easy.  Really, no duh!   It's the waking them up part that worries me.  We took Thomas to Children's Hospital in Minneapolis and had a wonderful physician and had a very comforting, reassuring discussion with the anesthesiologist who once again, validated my concerns about the nature of SC Trait. 

As I type, Marc is at his office trying to schedule an appointment for Thomas at Children's Hospital in Minneapolis.  We need to have him seen by a surgeon and to establish the relationship with a physician that can provide the surgery at a hospital familiar with kids with SC Trait.  The anesthesiologist at Children's have been wonderful to Thomas in the past and I have ever hope that their skill will meet the level I desire for my child. 

I am so frustrated by the medical services here.  I am also immensely humbled that while I sit an complain about my frustrations, I can still pick and choose which doctor and where to take my son for treatment.  It's so sad to realize that just 500 miles from the tip of Florida, people are dying everyday because they do not have access to a doctor and simple medicine.  The people of Haiti know what real frustration looks and feels like.  I have very little room to complain right now.

I am grateful that we  are able to provide the best medical care we can and that we have options.  So many in this world do not.  That's a reality that breaks my heart.

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