I am just furious today. Furious. I don't even know if that adequately describes the bundle of emotions digging their way around inside of me.
We finally heard from the neurologist today regarding Jonah's episode last Thursday. I literally cannot believe the conversation we had, this is an obviously watered down recap of what happened:
Doc: Jonah's scan was abnormal on the right side and there was a lot of slowing shown (no duh, he had a Grade IV bleed at birth) but we did not see any seizure activity.
Me: So you are thinking this is Autonomic Storming?
Doc: (NO JOKE HERE) Umm...I guess, yeah. How is he doing on the Clonopine?
Me: Uhh, no one talked to me about meds or prescribed anything.
Doc: Oh, ok. So he did not start Clonopine
Me: (thinking dumb doctor, you would have prescribed it) NO.
Doc: Oh, well if his behavior is stable let's wait and see if he has another episode in the next month and then we'll discuss starting Clonopine.
Me: (SCREAMING INSIDE, THIS WAS HIS 6th EPISODE - HOW MANY DOES HE HAVE TO HAVE?) Ok." (End of conversation)
Can you literally believe it? What seriously floors me is his response to the Autonomic Storming question, "Umm...yeah I guess." What the?? What angers me even more is the lack of urgency in getting Jonah the proper diagnosis so we can treat the issue before it happens again. Why in the WORLD would I want to sit around and watch my son go through the hell that he goes through when he has these episodes?
Unfortunately, I checked out getting a second opinion a couple of weeks ago from UCLA and their clinic was so impolite about getting Jonah in (and very rudely pointed out they have a 3-month waiting list) that I decided to try Stanford, even with it being the farther drive. The woman I spoke with today was kind and helpful and encouraged me to get the request in through my pediatrician and once an authorization kicks through the system she said they had April and May openings. Let's just say that Shane is NOT thrilled at the extra time on the road but what is a desperate Mom to do? I cannot sit around until July waiting to get a second opinion while Jonah continues to have episodes and the doctor who has seen him acts like he, himself, is not even sure of the diagnosis. I need someone to stand in and start taking my son's health seriously.
In so many ways I am terrified to see what happens to health care with this new legislation that has been passed. I cannot even think of how horrible it will be for children like Jonah to get in to a specialist when their patient load suddenly quadruples and everything else goes down the drain. Ugh. Let's just say I am terrified for the future when it comes to health care and what that means for my son. I am already seeing preemptive work at the hand of Blue Cross. This year they started cutting back on DME equipment and I could not even get a stander approved for Jonah, a stander! The one piece of equipment that has been around for decades and is commonly used for disabled children! Come on now! To make matters worse, we now have co-pays with ALL our therapy visits (yup $20 a pop), we went from one year where there were no co-pays for therapy related visits to there being a $20 co-pay for each (and with 6 visits a week that adds up and fast). Why, you say? The insurance companies know what is in the pipe line with all this health care garbage being passed by the current administration, they are making preemptive moves to cover themselves and all of the additional expenses and losses that are coming their way. So, those of us who are the hard working Americans who have paid for insurance all along are getting penalized now and will continue to be penalized down the road. I better just stop there.
Anyways, back to the neurology issue. I am hoping that something is going to result and soon. We have to be given more clear answers regarding Jonah's condition. Please pray for us that we get a competent doctor to help us. I am not sitting around waiting for Jonah to have another episode when the next episode could be much, much worse.
I just had to vent tonight, today was a day that left me beyond exhausted. In addition to the neurology results and battling to get records transferred and a second opinion request put in to insurance, I was also in Madera with Jonah's eye specialist, getting him new frames/lenses, calling three different dental practices at UCLA to see who can get Jonah in the soonest as I am positive now he has a cavity and some other serious issues with his teeth and battling with our local pharmacy who once again messed up a medication for the boys. As soon as Shane gets home I am holing myself up in my room and reading Pendragon. I need an escape.