Last week on Facebook we gave you a little teaser that we had several things happening in the background that we would be sharing with you soon. If you’ve been following, you’ll remember: this year we’ve had a few of Tan’s doctors drop Medicaid insureds forcing us to seek medical care in other cities; our current van has been on a downhill slide to the most painfully slow death ever recorded in vehicular history and there are implications to Tan’s health as we lose our only source of transportation; changes to Tan’s medications in light of recent test results and we are now beginning to see some of the side effects of that change; the possibility of more physical therapy in Tan’s near future; and finally, Help A Quad Out Project teaming up with another well respected disability advocacy organization to create a t-shirt sale fundraiser.
There’s a longer discussion to be had here about the problems Florida is facing with Medicaid and a critical shortage of doctors in the state, but we’ll save that discussion for another post. How these two things currently affect Tan, and other disabled Floridians who rely on Medicaid insurance for their care, is that while the number of practicing doctors in the state continues to decrease at a critical rate, the immediate crisis that is already here is the alarming number of doctors refusing to accept Medicaid patients. In Panama City the situation has gone nuclear as the last remaining doctors who do accept Medicaid patients have reached their cap and can see no more, and the overwhelming majority of doctors left have declined Medicaid patients all together, refusing to accept the new state insurance that took over last year. The result is that Tan has been forced to seek medical care in Pensacola, FL.
It was a nagging, persistent pain in Tan’s sides that concerned his primary physician and led us to having an ultrasound performed on his abdomen. Combined with a raging staph infection that had been allowed to run rampant without proper urological care and the results found in the ultrasound, Tan’s primary physician was in a frenzy to find him a new urologist.
It was clear that this newest development in Tan’s health wasn’t going to be just a one-time visit to Pensacola—and we were right, as the written findings in the ultrasound concerned this doctor as well, leaving him questioning what the results were seeing and what they could mean. He immediately ordered for images from the original ultrasound and then decided the next course of action would be a nuclear medicine test to record Tan’s kidney function and a CT scan. Sacred Heard in Pensacola is the only hospital in the area to have the needed NucMed test, but more than ever we were convinced that this is the test that Tan needs most. See, there’s some history with this test. Just a little over four years ago I rushed a fevered, incoherent, and scared Tan to our local emergency room. He had been bed-ridden for nearly two weeks with a pressure sore that, though not infected, wouldn’t heal. Tan was forced to do everything in bed—eat in bed, sleep in bed, lie in bed, use the bathroom in bed. But our bodies aren’t designed to be prone like that and it took a toll on his body’s ability to perform natural functions. At the hospital, he was diagnosed with sepsis, a blood infection. Specialists from wound care, urology, gastroenterology, two separate primary physicians and a hospitalist (that’s not a typo, that’s an actual thing!) later, and none of them could pinpoint where the infection came from.
Lots of pats on the back later and reassurances that as Tan’s caregiver I had done everything right; all the doctors thought that both due diligence and bedside manner had been properly done. But I wasn’t satisfied…I knew I had done everything right; I wanted to know what had gone wrong. It was the urologists’ physician’s assistant, though, that had said something that caught us off guard. He asked what was Tan’s kidney pressure rated? What the heck did that mean? He recommended that Tan have a particular test done to measure the function and pressure of his kidneys…it was the last time that test was ever spoken. No doctor followed up on it, our questions about the test were ignored or glossed over, and so the test was never done. With this new urologist we had the opportunity to finally have this mystery test and we weren’t going to lose it (could we lose it? That’s a question for another post!)
It’s been three weeks since the all elusive NucMed test has been ordered and Tan will finally be having the test done this week, along with the CT scan, in Pensacola.
In our next post I’ll tell you about the situation we face traveling to Pensacola for Tan’s treatment and what affect this has on his health. Till then, stay tuned to our Facebook page for great links, stories, and pictures of Tan and disability mobility at www.facebook.com/HelpAQuadOut and on Instagram @quadout. For a little extra fun, if you’re a redditor, follow Tan at u/QuadOut.