On Tuesday of this week we saw the neurologist.
You know you are in for a really really long wait when the office ladies bring out a gift card to the coffee shop across the street and tell you to go get yourself a coffee.
When we finally get into a room...1.5 hours after our appointment is to start...the nurse comes in and says "I've never seen you before, have I?" Ummm, yeah you have. "Your last appointment was in December?" No, we have been here since then. And then proceeds to stare at the computer while asking questions and then not really listening to the answers and over simplifying the replies so she won't have to type as much.
Then finally (2 hours after our appointment was supposed to be)the doctor comes in reeking of BO, and wearing the LOUDEST shirt I have ever seen in my life. And then he proceeds to stare at the computer screen while asking questions and typing. And seeing that he is now on baclofen (which J is taking for retching, NOT tone as he is hypotonic) he remarks how loose he is. Yeah.
The best part was as we were checking out the doctor handed me the notes for the appointment (since they are now computerized they can just print them out). I stuck them in my bag and did not look at them until the next day. When I did look at them the first thing I noticed was his diagnosis: "Epilepsy--in remission". Huh? Then I noticed the follow up was recommended for 12 months even though he had told me 5 months. Then I saw "recommendation: follow up with psychologist" WHAT!???
They had given me the completely wrong person's records!! Needless to say I am looking for a new neurologist. Anyone know a good one?
Today we traveled to Milwaukee to see the GI. We saw him in the regular GI clinic and not the motility clinic as we usually do so we did not have our usual nurse.
We talked about the baclofen and how the pain doc was now aggressively raising the dose (even though the GI had rx'ed it originally) so we could see if it was going to work rather that just sitting around doing nothing. It does not seem to be doing much for him if anything, and it has definitely caused him to be tired and lethargic a lot of the time as well as him not being able to use his hands as well as he used to and has less head control. So basically med does not work and causes other problems. But he did not seem to understand what my concerns were.
Again he told me that after baclofen, he had no other options other than surgical and he does not recommend those at this time. He does recommend going to the drooling clinic to see if getting his secretions more under control would help at all.
Then we talked about his bile output which is still a lot and dark green and causes his poops to change consistency and color too. He did not have any thoughts/comments on this, but did feel his belly to see if things were backing up. I need to tell him every time that Jackson has only watery poops.
Commented on how his weight was a little high for someone with severe disabilities. Yes, we are aware of this...but he is only getting 750 calories a day and I am not going to cut it more.
So now he is recommending we go in every 6 months (after having been seen every month!) and he is just going to be managing his tube and acid medicine (which I don't even know why he is taking this as ph probes/scopes/biopsies were normal and it has not been helping the slightest bit anyway!) So nothing has been solved...we still have all the same problems...and he wants to see us only every 6 months.
I am feeling a little bit down after this appointment. It seems like this is yet another doctor pushing Jackson's problems off on other doctors because they don't know what to do.
Luckily, the pain doc seems like a man with a plan. Hopefully he will be willing to keep trying.
