Connor's scan 3/14

On Thursday we were supposed to head to CHOP by 10:30 at the latest to get there for his 12:00 shot. The night before I had something just pop into my head. Gee I wonder if anyone got this preauthorized? He was supposed to get this scan and it was set up by the hospital a few weeks ago. But, the way things were going I wasn't taking any chances. I called our ins co first thing in the morning. That turned into a nightmare of hours of phone calls Joe and I were both making and up till the time we left we still didn't know if we were going to get this done. Actually we didn't find out for sure it was going to happen until we were over a half hour into our drive. No one bothered to get the scan authorized. I don't blame my dr for this because she doesn't usually order this test. The original one should have had the authorization but there was nothing on file. That started this experience on a great note.



We got to the hospital to find out that the "shot" he needed was actually a iv that they were going to put it in to give the medicine, take it out when done & then put it in again the next morning. I convinced them to let him go home with the iv and I would flush it. The worst that could happen is that he would pull it out or it would become dislodged and we would have to do it again on Friday morning anyway. Connor has very deep veins and he is not an easy baby to get an iv on to begin with so they were more than willing to give it a try. They gave me all the stuff to flush it and thank God it stayed in place and they were able to use it.



Shot went fine. They have to give it slow because if given too fast can make him sick. The next morning was a nightmare. Between traffic and construction it took us over 2hrs to get there. We were already late then we couldn't find a place to park. I was so afraid they were going to tell us that they couldn't do it. I was practicing in my head the argument I was going to have with them. There was no way that they were not going to do this test!!!! Scan was supposed to start at 11:00 but didn't get started till just after 12. He did fine and woke up easily. Now we wait. I plan on calling his neuro dr on Monday. They have to know something by then. I hope. I will keep everyone posted as things unfold.

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.

Quick Update 3/9

Just a quick note to let everyone know that things are pretty much the same on this end. Connor has gotten over the RSV & stomach virus that was making him so sick. Neurologically he is the same. He is still walking like he is just learning or drunk and other times he can't even stand up without falling backwards. He is still not talking and has started to try to get us to understand him by pointing and grunting. If he wants a toy opened or something he will take our hands and put it on the toy. He loves to play with the wipes box but if it is closed he will take my hand and put it on top of the box and grunt. If I move my hand he will just keep putting it back on until I get it and open the box.

So far we have not heard from any of his doctors. They released us on that Sunday and I put out calls to everyone on Monday because he was too sick to have the scan. They would not sedate him. I called and let his neuro dr know and asked her to call me back and to date I have not had a return phone call. I am making calls tomorrow again and if I don't hear from anyone again I am not sure what I am going to do. I will have to do something and assume we have been abandoned and try to find someone else to take his case. Right now we have been on our own since 2/21 when they discharged us from the hospital. He has not been examined by anyone for any of the neuro problems. He has seen a pediatrician when he was sick and in the er but that is it. We have no plan of action and no idea what we are supposed to do.

Please keep Connor in your prayers. He really needs them.