A New Neurologist in the Making

December 12, 2010

Today I went around handing out little thank you notes to those who were there for us in the moments following Joshua’s loss.  I included some gift cards for dinner to celebrate family.

One of the stops I made was with a neighbor who barreled through two big burly police officers to get to us as the sirens and lights whirled around us.  T, is the cute mother of two who just a few years ago decided to turn in her IT hat to go to medical school and become a Neurologist.  The road of sacrifice for this family has been great as her extremely supportive husband maintained the household here in Herndon as she pursued medical school 2 hours away during the week and returned to her family on weekends.

T informed me today that she is pursuing Pediatric Neurology leaning towards a specialty in seizure disorders.  I was hoping all she had witnessed with Joshua would not chase her off and was hopeful Neurology  would be her path.  I have told her I will buy her artwork for her practice when she opens and she says she expects me to be there to speak with people.

We discuss the funny stories of Joshua.  T’s yard backs up to ours with a 4 foot picket fence dividing the properties.  Last summer after playing neighborhood tag football Joshua decided to jump over the fence rather than walk around to the gate.  He was a big boy…5’7” 150 lbs and the fence had 2 decades of weather in its’ history so of course when Joshua jumped, part of the fence came down with him and he caught himself with his right hand.  He came in the house holding his hand but  said it 'just hurt a little' so I gave him an ice pack and had him sit for a little while to rest.  Within a couple of hours, he was starting to feel some real pain so I told my husband Brad we were off for xrays and sure enough, he had cracked a bone in the growth plate area of his wrist.  Later when they were putting a green cast on his arm I asked Joshua, “Son, why did you do that?” to which he said “I thought it would be fun” to which I asked “how did that work for you?”  He looked as me with a tint of that mischievous light in his eye “well, it wasn’t as much fun as I thought it would be”.

T was interested in learning the medical facts of Joshua’s death and we discussed what we had been told.  The official cause of death was Hypoxia.  A condition known to most as high altitude sickness where the levels of carbon dioxide become dangerously high and oxygen levels dangerously low leading the blood to thicken which in turn makes the heart work tremendously hard.  The end result can often be death by cardiac arrest.  An interesting discovery through our initial research was a term called SUDEP.  Sudden Unexplained Death of Epileptics.  It has some similarities to SIDS and while documentation of this is spotty at best, it appears there is nothing that can be done to help those who fall victim to SUDEP. 

Another statistic that those in the field of seizure disorders are trying to substantiate or disregard is the statement that epilepsy- related deaths are as high as those who succumb to breast cancer.  It is hard to substantiate because death certificates will list causes such as drowning or auto accidents as cause of death when in reality it was likely SUDEP with its’ pulmonary edema/cardiac arrest as the culprits.

We had always treated epilepsy as a controllable chronic illness and never quite took it as seriously as we now know we should have.  We fully entrusted the doctors who guided us, and the medicines that helped our son maintain a full life.  Epilepsy research is so low on the totem pole behind cancer and heart disease, and I am amazed at how many families are touched by epilepsy with someone within their family suffering from seizures or at one point living with seizures.

I’m not sure I find comfort in all this information, but it does seem to help me get out of my “what if” questioning moments.

I feel God is using me for some purpose and I will see what that purpose is.  In the meantime, I will support my family, love my God and deal with the constant pain in my stomach as I miss my mischievous and loving son.