Well December was 4 years since Josh had his surgery for his Chiari. It's certainly been a long road. We continue to try and find the best way to handle all the medical and physical issues.
Last June Josh had his gall bladder removed, which should have been a routine no big deal surgery. He also had a tumor removed from his upper abdomen. Unfortunately nothing ever goes routine with Josh and the morning after his surgery he woke up paralyzed from the waist down..... He was transferred down to St John Main and care was taken over by a physician who decided Josh was just a drug seeker and was basically faking it. Called in a psych consult (who didn't support the conclusion he was faking it). They put him on steroids and slowly his feeling nad movement came back. No real diagnosis (that I know) was given for the paralyzation, but he was home.
He went and saw an infectious disease doctor for possible reasons for the tumors and the vision and the weakness, and whatever else could be causing all or some of his problems. The doctor did a bunch of blood tests and his lead level came back weird (I guess, not sure what the orginal test says) but the doctor had him do a 24 hour urine collection to test for lead. So that test comes back 8000 X's what it should be and it was repeated a couple times in the lab. So the doctor has him do one more blood test which comes back normal and so he's kind of been dismissed. It's all very strange!
He also took a trip to the Cleveland Clinic which was basically a waste of time. He needs to have a more specific reason to go down there and his neurologist isn't exactly helping with that. It was eluded to that he needs more psych help than anything (mainly after looking at his med list) so after that trip we concluded that if all these doctors are going to assume it's mental then we will see if the mental doctor can help to coordinate all of it!
We finally got back in touch with the psychologist he liked down at Henry Ford and she agrees there is A LOT going on with him. She is willing to start by getting him into the neurologist in the next rooms next to her office and start with him. She has definitely suggested that he be seen all within a "System" wether U of M, Henry Ford whatever...... I went with him to his last session with her (per her request) and she is very good. I think she understands as well as I do about what all we are dealing with and she is very willing to help weed it all out. I mentioned there is a lot of distrust between Josh and doctors that has been built up over the last 4 years for sure. She asked what my biggest concern is and really it's figuring out what is a real medical problem that can be treated and what is a side effect from "not being heard" by doctors, or drugs, or possible heavy metals.... It's all such a jigsaw!!
So basically it was nice to have someone else to seems to understand this is NOT a "mental" problem that he can just turn off and move on with life. He can't just decide one day everything is fine, get up and do what he wants. He has chronic pain cause by a whole list of things..... real pain that does not go away. He does suffer from non-epileptic seizures which only means we do not know the cause of them, not that he is faking or they are any less serious. His day to day life does and will continue to change constantly depending on what is going on. As much as it seems like he's just lazy, depressed, and seemingly drugged out..... he's not! Very hard to understand when you don't live it everyday.
I am almost half way through my PhD and super busy with my job too. I am still teaching kindergarten and this year we have full day kindergarten which has been awesome!! I am enjoying my students but not all the new politics and such that have come with it this year. It's very hard to keep focused on the kids and do right by them, but I am hoping very hard they are enjoying their kindergarten year!
Emily is also in kindergarten this year and doing well, not that I am suprised. Billy can't wait to go to school and has been telling us he has his own school with his own teacher but not sure where or who he goes with! Kainan is definitely like his daddy!! He's quite a handful!!
So I will update more as I have the chance to. Josh will be having a lot of doctor apts over the next few months, we just hope we can get a good handle on what is going on with him. Thank you for all the thoughts and prayers!
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