2/14/08

The update to our Dr appointment that we had on Tuesday the 12th is that we never went. We had a snow storm that didn't amount to much but the roads were bad. We didn't want to take the kids out and risk an accident. After I cancelled I tried to reschedule & we were informed that our pediatrician will be away and they tried giving me an appoint for March. I told them we couldn't wait that long. The receptionist said we could see one of the other dr's. I said, no. The other dr's have not seen him through all of this nor have they been the ones keeping in touch with our neurologist. These are some of the same dr's that kept blowing us off when we were trying to tell them something was wrong. I don't think so. We decided to not go in and just make the call to our neurologist on Wednesday the 20th like we were supposed to.

Today our neurologist called me. (I was shocked me let me tell you. Also it made me worry that something else is up). She asked how Connor was and if he was getting any better. I told her no. I told her that he hasn't regained any words and he is much more irritable. Our Dr asked when we are supposed to see her. I reminded her that we have nothing set up. The way we left things last week was that I was supposed to call her on the 20th and if he wasn't any better she would set up the MRI of his brain and spine and do the metabolic work up. I told her I had the RX for the blood work already. She is not happy with the fact that Connor has shown no improvement and she wants to move everything up. She is putting in the paper work to do Connor's MRI at CHOP sometime next week as an outpatient. She told us to get the blood work done while we are there.

After all this is done and she gets the results she will decide about putting Connor back into CHOP for more advanced and invasive tests and treatment if there is any. I could be wrong but I got the impression that she is going to end up putting him back in. I know last week Dr Venkat (neuro Dr) was talking about ivgg therapy and how she wasn't ready to do that yet because it is a blood product and that can bring it's own set of complications and problems. I just looked that up and I haven't seen what that is going to accomplish for him since we don't know what it was that caused this. The articles I have read state that it works well for kids that were exposed to certain diseases and you know what they are and it is given early after exposure. I don't see how this is going to help him but you can be sure I will questioning his doctors and understanding how this will help before I will allow them to give him anything.

I am waiting for CHOP to call me today so we can find out when we are going in for his tests. I just have to make sure it is not on Tuesday because that is the day we have to go to my pain Dr or I will be out of meds and that will create even bigger problems and I will not be any good for anybody. Thank God the company and people Joe works for are so great and understanding or I would be in a real mess. As it is we have to worry about the lost money from the days off but at least we don't have to worry that the job won't be there on the days he can go in. Without that we would have just one more things we would have to worry about. He couldn't be working for a better company right now. They have always maintained through out all of this that Connor comes first and not to worry about the job it is there and isn't going anywhere.

I will post again as soon as I hear from CHOP and have a date for his tests. I dread having to go through all this again especially the sedation part. His reaction to that was something I never want to see again. As long as they don't give him that one medication in that little cocktail they prepare for him then he should be good. BUT, I will always be holding my breath every time he has to have meds now just waiting for a reaction like that. It is something I never ever want to see again.