Catching up...

Life has been a bit busy around here. Imagine that. ;)

Tuesday we went to the peds office to have Fayeth's laceration checked. It is healing well. The edges look to be back together well and she should heal nicely. Of course she will have a bit of a scar, but you know, that happens. I also asked Dr A if she would order a shunt xray because Gabe was having some pretty bad shunt/pressure/chiari/dysautonomia symptoms. I wanted to make sure that his shunt had not reprogrammed itself. That is always a concern anytime you go out into public. magnetic doors, items in a store that use magnets. You never know when you will come across a magnet that will be strong enough to reset the shunt.

I had to go into Chicago that night so she was good about ordering this for us. When we got home I checked his films and his programmable valve was set at 3 which is where he is suppose to be. YEAH! However the tubing in his back appeared to be kinked. Another chiari mom thought the same thing. While in Chicago I did not see anyone at the hospital that could help us.

Wednesday the prelim xray result came in with, "The shunt tubing is noted to overlie itself within the paraspinal region". A very fancy way of saying that his tubing is kinked. Frim was not impressed with this and said that he needed to see the films. I got the address to mail them and then decided to drop them off Thursday at Clinic and then go to the Museum.

I heard back from Frim last night that we will talk when he gets a chance to look at the flims.

So long story short, Gabe currently does not have a functioning shunt. So that is the reason for all the increased pain issues, ect. On the occasions that he is able to reposition himself and it does the trip to temporarily unkink the tubing he immediately low pressures because he cannot handle the rapid decrease of pressure in his head. So, now we wait. I am going to be aggressive with this because I want it fixed. I am in hopes that if we get the shunt fixed that he can come off the methadone. In my opinion the methadone is a bandaid and I am tired of using a bandaid to cover the problem.