We are at the hospital. Sorry to have been gone so long. First it was a problem with the bill after paying cash for a medication the doctor wanted her on - turned out it WAS covered but we had alread paid by the time it went through. Then there was a problem with the line going to the end of our street.
It was a quiet week with no internet, lol.
Jess is checked in and waiting for the eeg tech to come and hook her up. Given the EEG wires, she will be Medusa for Halloween. So far things sound good. Seems most people do NOT stay the full 5 days. The doctor has access to the eeg readings from his home and office, so as soon as he has seen enough we will go home. We packed enough stuff to keep us for a week, lol. I like this hospital a lot more so far. They have more than just junk food for the kids when food service is closed. Food service is cool - you call when you want food, 7 a to 7 p. and they bring it up. No deliveries of food just because thy have it fixed. LOTS of fresh fruits, etc... and your choice of many things. Plus, after hours, they have a freezer with pizza, ckn nuggets, and mac and cheese that can be microwaved. The fridge has juice, cheese sticks, applesauce, etc.... The other kids' hospital, the one we were at a year ago, didn't have anything but sugar/carbs and juices available on the floors. Of course they had four flavors of ice cream in little cups on the floors, but no real food.
Even better, when talking to the nurse, she understood the difference between making the shaking stop by concentrating and having it stop when you are concentrating on something else. So far, no one has really seemed to grasp this other than the nurse at the current neuro's office (Dr. S is the current one, best in the state, last dr was Dr Scream a Lot, so Dr. S is NOT him). I have found over the years that if a nurse understands she can get the doctor to understand even though Mom or kid or patient can say the exact same words and the doctor will NOT believe it no matter what. So this is a good thing. The nurse at the other hospital seemed to understand, but she mostly nodded her head and made um-hmm noises, which only really sank in when we were leaving.
Anyway, it has been an interesting week. One thing I LIKE about this hospital is that they give one parent tray for each meal delivered to the room, plus there is a snack bar that will give a parent a free lunch each day. It was really expensive to eat at the other hospital, like $8-$10 per meal for a sandwich and fruit type meal.
Anyway, I can't wait to read how you are all doing. Jess had a freezng spell a week ago that was 7 hrs and the next day had a 13 hr one. So I hope and pray that this will get us some help.
I have decided to force a referral to a rheumatologist after this, esp if this doctor can't/won't help.
Jess is a bit bummed about not trick or treating this year, but Gpa bought her a bunch of candy and I bought a few bags too. I can't wait to see pics of the Halloween costumes of your kids, if you feel comfortable posting them!!!
Happy Halloween!!!!!
It was a quiet week with no internet, lol.
Jess is checked in and waiting for the eeg tech to come and hook her up. Given the EEG wires, she will be Medusa for Halloween. So far things sound good. Seems most people do NOT stay the full 5 days. The doctor has access to the eeg readings from his home and office, so as soon as he has seen enough we will go home. We packed enough stuff to keep us for a week, lol. I like this hospital a lot more so far. They have more than just junk food for the kids when food service is closed. Food service is cool - you call when you want food, 7 a to 7 p. and they bring it up. No deliveries of food just because thy have it fixed. LOTS of fresh fruits, etc... and your choice of many things. Plus, after hours, they have a freezer with pizza, ckn nuggets, and mac and cheese that can be microwaved. The fridge has juice, cheese sticks, applesauce, etc.... The other kids' hospital, the one we were at a year ago, didn't have anything but sugar/carbs and juices available on the floors. Of course they had four flavors of ice cream in little cups on the floors, but no real food.
Even better, when talking to the nurse, she understood the difference between making the shaking stop by concentrating and having it stop when you are concentrating on something else. So far, no one has really seemed to grasp this other than the nurse at the current neuro's office (Dr. S is the current one, best in the state, last dr was Dr Scream a Lot, so Dr. S is NOT him). I have found over the years that if a nurse understands she can get the doctor to understand even though Mom or kid or patient can say the exact same words and the doctor will NOT believe it no matter what. So this is a good thing. The nurse at the other hospital seemed to understand, but she mostly nodded her head and made um-hmm noises, which only really sank in when we were leaving.
Anyway, it has been an interesting week. One thing I LIKE about this hospital is that they give one parent tray for each meal delivered to the room, plus there is a snack bar that will give a parent a free lunch each day. It was really expensive to eat at the other hospital, like $8-$10 per meal for a sandwich and fruit type meal.
Anyway, I can't wait to read how you are all doing. Jess had a freezng spell a week ago that was 7 hrs and the next day had a 13 hr one. So I hope and pray that this will get us some help.
I have decided to force a referral to a rheumatologist after this, esp if this doctor can't/won't help.
Jess is a bit bummed about not trick or treating this year, but Gpa bought her a bunch of candy and I bought a few bags too. I can't wait to see pics of the Halloween costumes of your kids, if you feel comfortable posting them!!!
Happy Halloween!!!!!