The I Word-Part 1

I had a feeling it was going to be different this time. The intensity of the first tonic seizure- the rapidity with which they repeated- over and over and over, the lack of awareness in between them, the glazed over eyes, the gruff, loud accompanying vocalization. It was just that much different. The paramedics and firemen noticed it as well. "This looks different than how they (seizures) usually are", one remarked. Followed by this from one veteran of the calls to our address to someone new to the Connolly 9-1-1 experience, "Michael is usually responsive and coherent between seizures".  Yes, for sure- this time is different.

When Michael continued to seize in the ambulance and then in the Emergency Room where copious
amounts of anti-seizure drugs were administered, and when the answer to the question of how long has this been going on is an hour, and when the vital signs clearly visible on the monitor are indicative that the patient is in distress, I'm not surprised to be asked if he can be intubated if necessary. Through tears and with an obviously distraught Barry by my side I hear us say in unison, "whatever it takes". When I hear the word Propofol (think Michael Jackson) it sends shivers down my spine, but I know they have to paralyze a seizing body to avoid injury when inserting the tube down his throat. I know all this but moments later when we are very kindly asked to leave the room and placed in a quiet, private area I am terrified of the prospect of Michael being placed on a ventilator. In nearly 27 yrs. of dealing with intractable epilepsy and multiple episodes of life- threatening status epilepticus behind us- this is a first.

We sit in that quiet room; me with tears streaming down, Barry with his head hanging low,
elbows on his knees, hands cupped over his face. I love this man who squeezes my hand in his- we
are in this together.

A nurse comes to gather us. She gives me a hug and leads us back to Michael who is now intubated, hooked up to a ventilator and getting EEG leads placed on his head. There are at least ten health care professionals surrounding his bedside- respiratory therapists, ER Attending, Resident and nurses, Neurology Residents and the officious Critical Care Neurologist who will run the show because Michael will be headed to the ICU. She announces to the room that if Michael's brain isn't sufficiently "quieted" by the current barrage of drugs, that he'll need to be transferred to her special unit in another facility. (Oh Jesus, I think, please, please, please brain be quiet). In 20 minutes all the neurologists remark how great the EEG looks. (Whoopee!) We 'll stay in the ICU just a floor above. The "bossy one"- Barry's words- will still be in charge but we're staying put in the place that knows us all too well.

The ICU team and several ER staff members prepare to transfer Michael- ensuring all IV drips, endotracheal tube and ventilator, nasogastric tubes and EEG leads and monitor are patent and working. Michael looks like a mummy. His head is wrapped in gauze from the top of it to under his chin to secure EEG leads. A large piece of flesh colored adhesive that is securing his NG tube is placed over his nose.  We can see his closed eyes, covered nose and the large tube protruding from his mouth anchored by adhesive patches on both cheeks. It is a frightening sight. Our son is hardly recognizable. We trail the staff , our son and the equipment  monitoring his brain and breathing for him to the ICU. We are calmer now. For a few minutes.