Appointment Update

Tuba had his appointment today. The news is good....sort of. As I was telling his neurologist how his seizures have been really bad she was connecting to his VNS. They put a wand sort of instrument over his VNS (which is under the skin in his upper chest). It's a computer that tells them the ampage, frequency, etc. They are able to program and make changes to the VNS this way. Anyway...she looks up and says...it's not even barely on! HMMMM! I KNEW it hasn't been working right.

Way back when he first had the battery replaced they had told us it was turned all the way up...to the same ampage as before the battery died. Then at the next appointment they said it wasn't all the way up and they turned it up. I thought maybe someone had just messed up...or I had been confused. We have been in a couple of times since and had adjustments made...none having any good effect. At the last appointment they turned it to 2.5 and today it was at 0.5! NOT GOOD. So, there could be a couple of things happening here. The VNS comes with a magnet that you can use to swipe across the chest over the VNS during a prolonged seizure....or it can be used to turn off the VNS in cases of malfunction...by taping it over the VNS. From the readings taken today it appears that the VNS has been magnetically effected...and we haven't used the magnet on him except once.

The plan is to look for places in his environment where he could have come into contact with a strong magnet...anything within arm's reach of his chest. We did have the VNS magnet hanging on the front of the fridge. We are going back to Children's next week and at least once a week to see if the settings remain or if they change. We are also keeping Tuba out of the laundry room and away from the washer he loves so much. The door has a magnet closure...and he does spend a lot of time watching the bubbles go round. Bummer for him...as he loves to watch it.

I'll post later as we find out more....keep praying...I know that God was speaking to me about the VNS...I just knew it wasn't working right. For now it's turned back up to 2.0 and will hopefully decrease these seizures.

Just to make you laugh:

As Tuba and I were waiting for the appointment I was thinking how over all the years of visiting Children's Hospital I have met so many kind and happy employees. Only once have I ever encountered a crabby or rude person working there. That is amazing considering the hundreds and hundreds of people we have met and worked with over 12 years.

I started to giggle remembering the one cranky person! Tuba was being admitted for a 24 hour EEG. They were hooking the electrodes to his head and then to the EEG machine and we had to stay in one room the whole time with him being video taped and the EEG recording the seizures together. The gal who was hooking him up was REALLY crabby and short with us and Tuba. After she left the room Cam called her a name and commented on how rude she was. I agreed and then flinched as I realized we were being recorded and she was the one who would be viewing the tape!!! Oooops! :0