While the doctor crisis happening in Florida (read here and here) continues, things for Tan has found an interesting little sweet spot, but that’s a story we’ll save for another. I promised in our last post to tell you what the travels ahead in Tan’s medical journey mean for his health and how it directly impacts what we’re trying to do here with Help A Quad Out Project.
A few posts back I recounted our first experience with using Medical Transport to get Tan from our hometown of Panama City to his new urologist in Pensacola, FL. You can read that experience here. While the driver was courteous and pleasantly conversational, the system of using medical transport has a lot of kinks that it has never been able to work out. For those who don’t know or aren’t familiar with what medical transport is, it’s a system of conversion vehicles run by a third party that uses transportation professionals to pick up medical patients with a physical or intellectual disability from their home or living facility and transport them to medical appointments and activities. This is a service that is paid for by insurance, like Medicaid. The system works on an operation of scheduled pick ups and may be transporting more than one patient at a time. In order to accomplish this, patients are scheduled within a window of time that is supposed to allow the driver time to pick up and drop off their patients much like a bus route.
Who could argue with free transportation and a chauffeur!? Well, the theory is better than the practice. Some downfalls are: all pick ups have to be scheduled at least two weeks in advance; there is a window of time in which the driver picks up and drops off the patient, usually two to four hours prior and after the appointment, that the patient must reserve open for the transport driver; and the patient is at the mercy of the schedule of the transport company and its other patients scheduled for the day. If that timeline hasn’t sunk in for ‘ya, here’s the gist: a single one hour doctors appointment + allotted 4 hour wait for pick up + 4 allotted wait period for drop off = 9 hours of your day. That’s right. Go ahead and take off the whole day for that doctor’s appointment. Is this typical? …Yes. Could it be done faster? …Yes. But that’s the trick of it; you won’t know because you’re at the scheduling mercy of the transport company.
So why go through it at all. Well, there’s a few reasons. In Tan’s case, we’d be using medical transport to offset the cost of gas traveling to Pensacola, and there are also concerns about adding more wear and tear to the van. Here’s some little known history on the van we have loving named The Beast.
- The van has turned a whopping 17 years old (Happy Birthday, Buddy!)
- It has had major engine repair
- Replaced transmission (not replaced parts or simple rebuild–no, this was out with the old and in with a brand spanking new transmission because there was nothing a specialist could do to save the old one…R.I.P)
- Gone through one compressor, a radiator, and three water pumps
- A new master head cylinder (for those all important breaks)
- Had three separate sets of hoses fabricated (because not a single dealership or auto store had them in their inventory…anywhere…in the whole nation!)
- A new car battery every year…for the past 10 years (Yay! for warranties, because we haven’t paid to replace the battery in 10 years…but…we’re pretty sure it’s not normal to waste through a battery a year!)
- And lets not forget battery harness that was replaced in the hopes that perhaps it was the thing shorting out the batteries…it wasn’t…
- Replaced fuel pump
- Replaced power window motors (yeah, we were those horrible people sitting in front of you in the fast food line who had to open the car door to place, pay for, and pick up their order while their door alarm blared in that high pitched, ear splitting octave…for a year…we’re sorry…)
- Brakes, brake lines, brake hoses, brake shoes (OMG! So. Many. Parts.)
- Four A/C repairs, including the very recent replacement of the High Side Manifold Line
And that’s just the repairs we remember!
We haven’t even talked about the repairs done to the van’s wheelchair lift…about the same size as the above list.
See, repairs to your vehicle come pretty standard. Got a problem? Take it to the mechanic…or Google…Yeah, we’re those people too, the DIY mechanics till you can’t DIY no’ mo’! Then you take it to the mechanic. What mechanic? Well, you pretty much have pick of the litter! Sure there are mechanics that specialize, but overall you have your choice of mechanics, mechanic shops, and part stores. The same isn’t true about wheelchair conversion and modifications. Certain conversion companies specialize in certain conversion packages and manufacturers, and they train their agents to work on just those parts. Purchasing a wheelchair conversion is a lot like dating: You flirt a little with the various conversion companies available. You check out their goods. You decide if they’re worth the travel should you decide to have little modifications born out of the relationship (after all, those conversion babies will be carrying his name), and you try to picture yourself in the future with the conversion company: What you’re relationship will look like? Will the two of you still be happy? Will they still know how to please you?
What you don’t think about is will they die off, become absorbed into the bowls of a larger conglomerate, or worse–rebrand? Will they just up and forget the conversion you two had together and stop making parts for it? What happens when you need replacements! What happens when the new class comes in and takes over and none of them have ever seen your conversion before! You’ve been aged out. You’re old. You’re conversion is old. No body wants you anymore!
Poor Beast. It’s like an episode of Glee except singing and dancing isn’t turning this oversized honker into a dazzling swan.
The Beast’s A/C has given out on us for the fourth time now, and this time the news doesn’t look good. It looks like the van wasn’t courted by just one conversion company but two! See, there were after market parts installed in The Beast other than the wheelchair lift. That conversion would be a secondary A/C unit.
Why two air conditioners?
Because The Beast is big…very big. It’s common in conversion vans for there to be two cooling units installed to properly circulate and cool the vehicle, and consist of a large air compressor and evaporator core in the front of the van, and an additional evaporator core located in the back of the van. Running between the two evaporator cores is a 15-foot hose which pushes the refrigerant from the compressor to both evaporators. Both the hose and the back evaporator core are custom parts manufactured by the conversion company. It’s in this 15-foot line that we know there is a leak, but there is also a very strong probability that the back evaporator core is also no longer working.
Why is this a problem? Well, there’s no way to separate the front and back A/C units which means The Beast is only blowing hot air. Right now it’s like driving around in a locked hot box. Neither this custom hose or the back evaporator core are manufacture any longer. To replace, mechanics would have to do a complete overhaul of the system with a newly built retrofitted kit, all coming with a price tag a little too large to swallow. The labor alone is estimated at a couple thousand dollars.
Most people with spinal cord injury lose the ability to sweat below their level of injury. This symptom is called poikilothermic and you can read more about it here. As a C5-C6 level injury Tan doesn’t sweat from the neck down. Trudge through the mire of memorized lessons from your high school anatomy class and you’ll recall, we need to sweat to cool our bodies. Careful control over the environment surrounding them becomes critical for quadriplegics/paraplegics as their body isn’t able to compensate for temperature extremes. Where this puts us now, as Tan begins tests and treatment for the yet undiscovered problems with his kidneys, he will be forced to travel without air conditioning as Florida temperatures continue to rise. Dangerous as that can be, this situation is compounded as the tests that Tan will be having requires fasting, weakening his constitution and making it that much harder for his body to attempt to regulate its functions.
Currently we are working with the very helpful mechanics and a local fabrication company to create a modified fix for the problems with The Beast’s A/C that should. This is in no way a permanent fix and doesn’t replace the need for Tan to purchase a new wheelchair accessible van. As his medical future continues to look more and more uncertain, it’s imperative that we raise the funds sorely needed. Please continue to share Tan’s story, his need and his mission, and the Help A Quad Out goFundme page at www.gofundme.com/HelpAQuadOut. Please, donate if you can. Every little bit helps.
When next we talk, I’ll tell you all about our exciting new venture as we team up with disability advocates 3e Love to create a special, limited time Help A Quad Out t-shirt. A portion of t-shirt sales will raise money towards the Project.