January 26, 2011 at 9:51pm
Ok. I have tried several times over the last year to write this and every time I end up crying and can't. Many of you may already know the story or some of it. In 2009 I was chronicling Shawn's Neuro Appointments, Setbacks, and Progress but I was never able to write this one.
It has been just over a year since we nearly lost Shawn to his Epilepsy.
January 4th, 2010 I changed employers, not jobs but employers. I went from working for a company as an outsource employee to being an in house employee. Which meant a new boss and new rules. It was made very clear to us that we were on probation and that we were not to take ANY time off for ANY reason during our probation or we would be terminated.
January 6th, Shawn's school called and said he had two seizures and someone needed to pick him up. It was just before lunch time so I called Jim and asked him to get Shawn on his way home. We were planning to get Shawn stable and have dad watch him.
When I got home for lunch Jim had already given Shawn his Klonipin, which is supposed to stop his seizures when he goes into Status Epileptus. But Shawn was still seizing and he was screaming and begging me to take him to the doctor. I called Shawn's Neurologist in Phoenix but had to leave a message, so I called Shawn's Primary Care and they said to take Shawn to the ER. Jim and I agreed that Jim would take him to the ER and I went back to work.
After I got back to work Shawn's Neurologist called and I told him that Shawn was having Status Epileptus and was on his way to the ER. He tried to give me instructions for the ER but since I was not there I gave him the number for the Hospital and asked him to please call them.
After Jim arrived at the ER, he and Shawn waited in the lobby for almost 2 hours after he was triaged while Shawn continued to have seizures. When I found out they were still waiting an hour after getting there, I called Shawn's Neurologist back and told him they were still waiting. Shawn's Neuro told me that he had talked to a nurse and told them how to treat Shawn but the ER was full of Flu patients and they would get him in as soon as they could.
When I got off work Jim was finally in a room and Shawn was still screaming and seizing.They had already given him 3000mg of Keppra and 1mg of Ativan. Shawn's Neuro also told them to give him 400mg of Zonagran but they did not have it. We were faced with the decision of take him home and wait/hope for it to pass or have him transferred to Phoenix. We decided to have him transferred. They said he would be taken by ambulance to St. Joe's where his Neuro could treat him more effectively.
At 7PM we gave Shawn Zonagran from his home meds since the hospital did not have any and they gave him another 1mg Ativan. Shawn continued to get worse and screamed and screamed even though he had been given enough Ativan to knock out a full grown adult (4 times my tachycardia dose).
Shawn continued to scream and seize and they finally came in and said he was going to be airlifted. I went home to pack bags for Jim and Shawn, hoping Jim would be able to ride along. Jim and Shawn were taken away from me in the Guardian Air Helicopter at 10PM. The Guardian Air team gave Shawn 1mg of Valium before they left the ER hoping to calm him for the flight. I said goodbye to them in the ER then watched the Helicopter fly away from the parking lot. Knowing I could not go with them and that I had to go back to work and continue to do my job or risk getting fired. I faced the choice I wouldn't wish on my worst enemy, be with my family or work so I could continue to support them.
Jim called me after things settled down in Phoenix. They had given Shawn 1mg of Valium in flight and he was still seizing when they arrived at St. Joe's. 1AM at St. Joe's they gave Shawn 350mg of Phenobarbital which finally stopped the seizures. Shawn calmed down and went to sleep. The next day Shawn's EEG looked better than they had ever seen but he was still having seizures. Shawn's Neuro said anyone's EEG would look that good with Phenobarbital. Jim's parents drove down that day, and I called Shawn's Insurance to get help finding a place for them to stay. Thankfully Shawn's insurance arranged for them to stay at the Ronald McDonald House with just the one call from me.
Thursday night Shawn started to have seizures again. He was not able to walk or talk and his eyes rolled up in his head in front of a nurse. Jim thought we had lost Shawn and he wouldn't make it through the night.
Friday morning Shawn was back to his normal happy self.
The rest of that week I functioned nearly as a Zombie at work. I went in, did my job, and did not talk about my husband and son struggling so far away. Alex slept with me every night, so neither of us were alone.
Friday night I drove down with Angels watching over me to be with them. I could see major regression in Shawn from where he had been on Monday to where he was Friday but I had not been there to see his lowest lows. Saturday morning Shawn's Neuro told me that Shawn had made great progress and that I need to not be so critical of his regression because it is a miracle Shawn is alive. He then faced us with the decision of whether or not to have a Vagus Nerve Stimulator placed in Shawn to send a current to his Vagus Nerve that would help stabilize his seizures. This would be a major surgery that could not be reversed and would require us to travel to Phoenix every two weeks to have the device turned up until it reached a stable point. I could not make the decision and left it up to Jim and Shawn's mom. I hated that this was the question I could not face.
Jim and Shawn's mom decided to go ahead with the surgery and Shawn was scheduled for emergency surgery for the following Monday. I had to again choose to go back to work over being with my husband while my son was in surgery. Shawn had an adverse reaction after the surgery and had to stay in the hospital another day, before he was finally able to come home.
One year later Shawn's seizures have been greatly reduced and we only have to visit every 6 months to have the device turned up. Today was the first time I was able to take Shawn for his adjustment and thank Shawn's neuro for saving my son's life. I still cry when I think about it or talk about it. But the miracle is that Shawn is still here and is growing into a teenager.
**I meant to say that one way my life has changed is now whenever I hear a helicopter fly over our house I say a prayer because it is probably carrying someone's loved one.**
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| Shawn's High Honor Roll Award |
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