Our sweet boy had his EEG today. Can I tell you how good our baby is--even though he is going through soooo much-he is just as mellow and sweet as can be:) We love him so much! Sometimes I wish he would cry and scream and protest what he has to deal with, but he never does. I'm happy Les took off work to come with me to his EEG today. He was able to really see what I am seeing and witnessed what an absent seizure looks like! I know it's hard for people to understand, but I luckily have a lot of experience and caught these seizures--most wouldn't!!! They are very easy to miss. So Les (thanks Babe!!) kept Ry awake most of the night and woke him up at 5 a.m. so he would be very sleep deprived for his EEG today. We got to the hospital at 7:15. He was hooked up to a lot of wires and they were wrapped with gauze to stay in place. Right away he had an absent seizure (before all the wires were hooked up). It was the longest one I've seen yet. The nurse and Les were snapping and trying to gain his attention--but nothing. Les asked if the nurse would comment on the report since he wasn't hooked up all the way when it took place. She said she would definitely write what she observed in the report. The whole procedure took under 1 hour. It seemed that Ryder had several absent seizures during the EEG. I am happy that they where noted (of course wish it wasn't the case). I am also glad Les and the nurse saw what I was talking about b/c it's easy for people to think I'm over analyzing everything:(
I asked the nurse if I should call to make a follow up appointment for Ryder w/ the neuro. She said no that he will be calling me today.
Of course--I didn't expect that and called them;) I spoke with his medical assistant and his nurse (neuro). I called asking if I should make a follow up appointment--hoping to get some answers at 2:30 (EEG report sent to them at 8:30) The nurse assured me that either neuro doctor or she would call me TODAY (it's now 6:30) to discuss EEG and make a follow up appointment. Still no call---not surprised--but frustrated! Seriously--I might write a book with all this crazy miscommunication/lack of communication in the medical field w/parents!!!!!!! What if I didn't have the experience that I have??? Where would Ryder be or end up?????
It makes me sad. It is such a complicated process that we need to stay on top of...no one else will.
I did get an appointment with the top neuro for Peds in Az at Barrows today (been trying over 3 weeks!) I did name drop (thanks Courtney) and managed to get an appointment in March. I was offered an appointment at Barrows tomorrow w/ a different dr. who just had a cancelation, but I want Dr.Bodensteiner!!! The appointment may be moved sooner after I have MRI info sent to him. With the genetics doctor and 2nd MRI coming up, I'm ok with the neuro appointment being in March so we can have all results in for this dr. to see.