3/11 Heard from the Dr's

I made calls to all the dr's again on Monday and guess what. I HEARD BACK!! I finally got somewhere. I didn't speak to Connor's neurologist but I did hear from her office that she wants us to go ahead with the MIGB scan and she will see us after she gets the results. Connor's pediatrician did not get the first message I left her. By her reaction I really believe this. I don't think she was just saying this to cover her butt. She immediately called his neuro dr and called me back. We are to see her on Tuesday next week so she can examine him and keep on top of everything.

Connor's scan is scheduled for Friday the 14th. We have to go to CHOP on Thursday for the shot of radioactive stuff and then Friday morning he goes for the scan with sedation. They say God works in mysterious ways and that everything happens for a reason. I can now say thank God Connor got sick and was not able to have the scan a few weeks ago. When I rescheduled his scan I was told he will need to start the drops a day before he gets the shot. I then asked them "what drops?" Come to find out Connor needs to take drops the day before the shot and for 5 days after. It is potassium iodine drops. The same stuff that anyone living near a nuclear plant has heard about since 9/11. It protects the thyroid from radio active exposure. The shot he has to get could either kill off his thyroid or give him thyroid cancer. No one even mentioned this before. Connor's neuro dr is not the one who ordered the test. In fact this test is usually ordered by oncology. She ordered it for me this time but the main "roving neuro dr" at chop ordered it. He never even mentioned these drops when they discharged Connor and he would have had to start them the day after we were discharged!! Everything happens for a reason. I thank God we didn't get to do the first scan.

I don't know what the metabolic studies have shown. When I asked the neuro dr's nurse she said she didn't see anything in Connor's chart. She would look into it and get back to me. Our pediatrician called them within 5-10 min of my speaking to them and they told her that they all came back normal. So, that is something else I need to check into. I was told that the MRI of his brain and spine was unchanged and normal but they told me the last MRI was normal and when I got the report it wasn't. I am still waiting for that to come in so I can see it for myself.

If this test comes back negative I am going to put on a major push for either the steroid treatment of the IVIG therapy. We can't keep waiting for this to clear up on it's own because it's not. I haven't had a chance to get the therapies set up in the house for him yet either. We were so busy trying to take care of him when he was sick and of course I have whatever is going on with everyone else in the house on top of taking care of Connor and trying to keep him safe. I will make that call as soon as I get this scan done and get the results. We should have at least a preliminary report back early next week. I will post after his scan and let everyone know how he is doing. Please continue to keep Connor in your prayers. As far as I am concerned this is the scariest test yet (not the scan itself but what it could mean) and I am going to be a wreck till we have these results.