No? Well, it's just about as good as the wheelchair story. Speaking of which, yesterday we got a denial from CCS! Now we just need to get the deliver scheduled, pony up our 250 smackeroos, and Soren will have a new wheelchair! Hoorah!
But the G-Tube supplies is another doozy. Back when Soren originally got his G-Tube put in for feeding, one company supplied us with replacement Mic-Key buttons (the device that's inserted in the belly), extension tubes (the tubes that lock into the button), 60 ml and 10 ml syringes, and KetoCal, his ketogenic formula. Every month, someone would call and ask if I wanted to refill my order. This was quite nice since life can be a little overwhelming.
The only thing we didn't get monthly was the Mic-Key button, because that was changed out every 3 months. But you had to change it out, or it got really gross. And it was also good to have an extra one on hand in case you got a dud button, or in the event that the button got pulled out and you need to replace it. So for years, we had a good system going and were well stocked with supplies.
But then Soren's Keto dietician wanted to switch him from KetoCal to KetoVie to see if Soren could get better seizure control. This meant that a different company was supplying his formula while the old company still supplied the extension tubes, syringes, and most importantly, his Mic-Key button.
At first, everything went fine. I'd order the formula then order the supplies. But somewhere along the line, the ball was dropped. They didn't call to remind me. I forgot to call them. But then I realized that I'd be needing a new Mic-Key button for the next change out. So I called the old company, but they were super cagey with me. I was told that since I hadn't called in so long (maybe 2 months?), Soren's file had been closed. I explained the situation with the new formula and how I lost track of things, but that he still needed the Mic-Key button.
I got passed to a supervisor who clearly thought I was up to something nefarious. Obviously I was starting up my black market Mic-Key button racket. Cause every 3 months, momma needs a new pair of shoes.
The guy said I needed to get a new prescription from Soren's doctor to reopen his file. And knowing full well that this was my screw up, I called Soren's doctor and worked on getting the prescription. Once I got it, trying to actually get it faxed to them was a whole other ordeal. Weeks passed as I'd fax and re-fax to different numbers. I'd call, be put on hold, and was constantly told that I needed to get a new prescription. "But I just faxed you the prescription yesterday." I honestly can't remember how they finally got the prescription, but by some miracle, they did.
But, because things always time out brilliantly, they got the new prescription right when Soren was getting his VNS put in. So I was busy at the hospital. Then I was busy with Soren during his recovery. By the time I called them, 3 weeks had passed. I said that I needed to order the G-Tube supplies, especially the Mic-Key button. Once again, I was passed to the supervisor. I couldn't believe it. I knew I had everything in order. But the guy told me they were about the close this file again because I didn't call. I explained that I was very busy with my son who had just had surgery. He said he had to confirm, once again, that Soren still needed the Mic-Key button.
So I called the pediatrician's office and spoke to the phone nurse, explaining this insanity. The doctor confirmed to the company again that Soren still needs these supplies. I called in a timely fashion, and Soren finally got a new Mic-Key button.
Later, Soren and I went to his pediatrician's office for an appointment, and he was so frustrated with this company. How many times does he have to confirm that Soren is still using his G-Tube? But then he told me that the most ridiculous request he had was to confirm that that his patient with Down Syndrome still actually had Down Syndrome. Oy.
Now that I've ranted about this, I better call that company and order Soren a new Mic-Key button. Winter's coming and I could use some new boots.
Amy
