Journey

Up-date on Meghan: We spent five days at Duke Hospital in the Epilepsy Medicine Unit. When we got home Friday afternoon after picking Louie from the vet and spending $200 to board him and running by Aldi’s to pick up items such as milk, bread, etc, I was so happy to be home. However, I didn’t realize how exhausted I was. I was unable to leave her room because I had to alert the technicians monitoring the video taping of her stay. This was a teamwork of nurses, doctors, neuro-technicians, and all professions who are part of the team. When we arrived home, I fell asleep on the couch, went to bed, got up on Sat. to nap most of day on couch. Of course, we had to get the glue and mess out of Meghan’s hair and treat the skin irritation from her reaction to tape from the electrodes (30) on her head. No seizures since she has been home, yet.

Dr. Radke released Meghan after necessary events were recorded in order to compile the report and findings of her seizure study. The findings will be presented to the Neurological/Epilepsy team which will make recommendations for further treatment in Meghan’s seizure control.  The seizure study has been helpful in my recognizing the extent of danger of the two types of seizures Meghan has. The risk is high with tonic and tonic clonic seizures which includes SUDEP (Sudden Unexpected Death in Epilepsy.) “SUDEP is the sudden, unexpected death of someone with epilepsy, who was otherwise healthy. No other cause of death is found when an autopsy is done. Each year, more than 1 out of 1,000 people with epilepsy die from SUDEP. If seizures are uncontrolled the risk of SUDEP increases to more than 1 out of 150.”(www.epilepsy.com/learn/impact/mortality/sudep)

So now we wait…assimilate the knowledge and information that I have obtained during the seizure study.  And await the recommendations.  Then comes the heart-wrenching process of making a decision.  It is a feeling of Damocles sword…how do I know which is the best choice?   And it is not made easier that I am the only person who can make this decision.  I have spent 32 years protecting her.  I am her mother, and she is the love of my life.