This life is like a drive by

Tan Nguyen lays still as images and scans are taken of his kidney's function.

Tan Nguyen lays still as images and scans are taken of his kidney’s function.

Ever feel like your day is happening as a drive by? Someone’s popping off a few caps your way, leaving a wake of sticky sludge you have to trudge through to the other side. Soda…it can be deceptive that way. And for some reason, the neighborhood children seem to think our apartment hallway is the happening place to partake of after school snacks, soda’s, and sometimes even dinner, and leave behind them a wake of sticky, wrapper strewn sludge to navigate through down the long corridor to our apartment. Trust me when I say it is not easy to pry candy out of the tread of wheelchair tires, and life in our household has been just a little too busy of late to deal with other people’s messy children!

Preparing for the first battery of tests to examine Tan's kidneys.

Preparing for the first battery of tests to examine Tan’s kidneys.

When last we wrote, our current vehicle was undergoing some serious Frankenstinian surgery to the air conditioning system and we were preparing for two big tests to be done in Pensacola to examine Tan’s kidneys. The first test, a nuclear medicine test, captured images and video of Tan’s kidneys as they processed a cocktail of radioactive dye and diuretic. The second test, a CT scan, took high resolution images of the anatomy of Tan’s abdomen and pelvic region, capturing seriously detailed images of all his organs. All in all, the tests, the hospital and it’s staff was a good experience. Everyone we dealt with was friendly and informative, and both are important qualities when you or a loved one are worried about the potential results. We’ll be getting the results of the tests next week when we travel again to Pensacola for Tan’s follow-up with the urologist.

Earlier this week we saw another doctor, this time a Physical Therapist. At the end of last year, Tan’s new neurologist made some drastic changes to Tan’s current treatment for muscle spasms, a common symptom of spinal cord injury. These spasms range from quiet but continuous muscle twitching and can happen anywhere in the body, to full on all over body spasms that result in what is referred to as “extension,” which looks a lot like going into a sudden planking position. While Tan’s spasms are, thankfully, painless, the extensions can be strong enough to cause injury during transfers or even break parts of his wheelchair–most recently his headrest and backrest have suffered the wrath his spasms. The change–a lowering of Tan’s prescribed Baclofen dosage–came about when the new neurologist expressed concern over the high dosage. It was a question we had as much come into the appointment with as the doctor had when reviewing Tan’s records. Just a few weeks prior to the visit we had received a concerned consultation from a new pharmacist, and it was then that we found out the potential side effects of taking such a high dosage of the medicine for extended periods of time–kidney failure. It was the first time anyone had ever said anything, and Tan had been at this dosage for nearly a decade!

As we lowered the dosage, the change became evident almost immediately. We’ve only been able to halve the current prescription, unable to comfortably break that threshold and still allow Tan to remain safe and independent. So, at  our last visit with the neurologist we requested the addition of physical therapy. Attaining physical therapy after the initial injury is difficult. Insurance rarely wants to pay for it and doctors have to prove that there has been a significant breakthrough or improvement in the patient’s condition to warrant more therapy. In Tan’s case, the changes in his current medicine have impacted his life enough that the doctor determined therapy was a necessary course of action, and this week we conducted the physical therapy evaluation, the first step in attaining treatment.

The evaluation is simple enough. The patient meets with the therapist where they discuss the patient’s current level of injury and lifestyle, the problem or situation that the patient is facing now that warrants the need for therapy, and then what are the goals the patient hopes to achieve in therapy. Personally, at this point we always run through a checklist of goals: some are new, some are specific to the issue that brought us there, and some are old goals that were never quite achieved in previous therapy. The evaluation went well; the physical therapist has had a lot of experience professionally working with quadriplegics, particularly those from spinal cord injury, and he agreed to all the goals that we set forth…but, there are some hiccups. The facility isn’t equipped to work with someone at Tan’s level of injury or with the goals we have put in place. It’s an odd position we currently sit it–we got what we wanted but without a way to achieve it. The solution then is to look for a facility in the area that can help Tan achieve his therapy goals, though there was mention that this could mean having to travel to another city if one isn’t found locally.

On a positive note, one of Tan’s goals is strength training and increasing range of motion in his shoulders and arms in the hopes of gaining strength in his left arm. Currently Tan has very dominant right arm strength and this limits his options in manual wheelchairs and equipment, but we also realized that it has limited the options available to him in driving equipment. If Tan is able to increase the strength and range in motion to his left side, the options for drive equipment not only opens up but so does the price bracket, allowing us to find more affordable equipment options! Not only did the physical therapist believe that Tan is fully capable of achieving this goal, but it is one that the therapist does have the facility to work with.

We close this week with our plate ever full. Next week we travel to Pensacola for Tan’s test results and a better understanding of what he’s facing. We’ll be following that up with a consultation to meet a new local urologist to assist in Tan’s care, and the search for a physical therapy facility will continue.

Next time I’ll tell you all about the funny little “Battle of the Urologists” we have found ourselves. In the meantime, keep sharing our story and our mission through our blog and goFundme. You can also get stay current with news and resources on our Facebook page and see great photos on Instagram @quadout.


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