Just a quick posting for those who follow our family on blogger.
Jonah has now gone through two seizure episodes since May 20th. I mentioned the mess we went through on the 20th in trying to get the local ER to give Jonah an EEG. Since then we made an appointment with the local neurologist so we could petition him and his staff to ask for a standing EEG order so the next time Jonah had an episode we could get the test done.
Needless to say, I called this past Monday morning (met with the local doc this past Friday) to assure that the primary care physician had submitted the request to insurance as urgent. I was told they had not so I called Dr. Ho's office to resubmit the request, which they said they would do immediately. Our insurance is supposed to turn around urgent requests in 48 hours.
Yesterday at 4:00 we were all napping and I woke up to hear Jonah whimpering on the baby monitor, I knew he was in an episode. I raced down stairs to check on him, called our insurance rep and asked if the request was ready because we needed to get him to the local ER. Well, of course it had not been processed even though at this point it was past the 48 hour mark. I was furious and after 15 minutes of waiting for a call back (during that time I called back twice and just got voice mail) I called 911. By the time the ambulance arrived they finally had a decision for us and we took off. I was so frustrated, our insurance has messed up so many times with my boys. I called and filed an official complaint with the supervisor of the customer service department. I followed the ambulance up to the hospital and as I was pulling in to the parking lot a cop caught me on my phone. She told me to roll down my window, I did and she asked if I was with the ambulance. I said yes and she said, get off your phone! Of course I did just that and as I scrambled out of my car this same cop pulled around the parking lot up to me and began to yell at me that she could still ticket me even though this was an emergency situation, I nodded and yes, I assume I looked agitated because I was in the middle of dealing with a seizure! She then proceeded to scream at me that I was giving her attitude and she literally pulled in to the street and blocked me from getting to the ambulance (I am not being dramatic her folks, even an ER nurse saw what this cop did and came up concerned about me, the EMT said she this particular cop was known for being plain awful). I told her I understood what she was telling me and appreciated her not ticketing me but apparently that was not enough, she said she would be waiting for me in the parking lot, I said, "That is fine but I have to go my son is having a seizure..." She finally let me get to the ambulance. Are you kidding me? I am sorry I was on the phone with my son's insurance as we are driving emergency to the hospital because he is having a seizure, ok? But treating me like a hardened criminal when I am a law abiding, tax paying citizen because I made a mistake is just ridiculous. Honestly, I did not care at this point. I just wanted to get to Jonah. Sorry for the rant but come on! Anyways, I did finally get in to the ER, Jonah was coming out of the seizure so we scrambled to set up the EEG and hopefully catch something.
To add to our stress, I had an ER nurse who decided she wanted to pester me with questions (she was not even our attending nurse). I am somewhat used to people asking lots of questions because of Jonah's disabilities but when insensitivity is mixed in, it is really frustrating for me although I try very hard to mask my real emotions and instead be as polite as possible. She asked me if I would do IVF again knowing the outcome with the boys (can you believe it?), how did I take care of a blind child and how would someone who is blind function (are you seriously in health care or have you just not had any life experience? how many blind people live very fulfilling lives?), it must be hard for me having such a sick child, how do I do it, what is it like knowing he will need care for the rest of his life. Why is it always me? Is it because I look approachable? Perhaps having a stern, angered look would better suit me so people will leave me alone and not ask such asinine and insensitive questions!
Anyways, we waited until 10:30 p.m. to find out that indeed the EEG showed seizure activity in the right lobe (the area that was most affected by the bleeding after birth). I asked them to consult with his Cedars Sinai neurologist to see what anti-seizure medication she wanted to prescribe. We started him on Keppler last night and my hope is that it will be an effective dose but not an overpowering dose as these meds are known to cause children to be drowsy and not as attentive and we certainly do not need this. We made it home at midnight and settled in to bed by 1:00. Poor Shane had to return to the night shift so he could suspend one of his employees and ended up staying until early this morning. We are taking shifts today trying to catch up on sleep.
I applied for a position with our school district doing clerical work at one of the local elementary schools. We are still trying to research the local school system so we can be prepared for Jonah's IEP in the fall.
Shane continues to apply for work opportunities, I laugh because just last week he applied for a local job and I told him of everything he has applied for he will hear back from the local recruiter. And he did! Monday, the local recruiter called. He is sending on Shane's information. Yes, it would be a great increase in pay and provide Shane with a larger management role in a larger organization but it would still be local! Good grief! So that is what is happening here in California.
We will continue to keep you posted as things happen. We have a lot going on this summer, hopefully we will be able to receive some long awaited answers soon.
God bless, everyone.