From the beginning I have known I was CHOSEN FOR SOMETHING. April 10th when I was called to the hospital to advocate for Phray I met Ywi and immediately loved him and he me. Beyond the difference in size and skin color and ethnicity and educational background and every other demographic "barrier" there is a spiritual love and a mutual understanding- a kinship of our soul. Ywi has described it as the God's secret. For exactly what I was chosen I had no clue. Originally I thought it was for mission work over seas, then mission work here, what ever it is- it is to be done with Ywi forever. Now with each passing day of the last four months, I understand it is less about Ywi and I- but for Phray Reh.
When I used to teach workshops to refugees I would explain about US culture and the laws. I often taught about the US government and the rights of vulnerable groups such as children, disabled and the elderly. I explained that the US government tried to protect these vulnerable groups. I often cautioned refugees about discarding certain non hygienic practices or other cultural norms that would draw the attention of the US government to misunderstand a refugee's culture. I discussed that the United states has governmental social service agencies that can remove children, disabled or elderly from one's care into a home and into the care of the state government. I NEVER EXPECTED I WOULD BE WRITING ABOUT PROTECTING MY VERY OWN LOVED ONE FROM ONE OF THESE SUCH GOVERNMENTAL STATE SOCIAL SERVICE AGENCIES.
Today it was revealed to us by a source that Adult Protective Services was notified that Ywi and I made a choice to keep Phray out of the ER yesterday when his BP plummeted into the 40's. When Phray's PCP was out of the country and there was no one on call to cover for him, We chose not to call the ambulance but instead to care for our family member with love and hope at home. Ywi made this choice based on historical evidence of Phray's previous visits in the hospital where he lay for days despondent and depressed. We chose to take action with extra tube feedings, increased hydration and adding in a bottle of coke for a little caffeine stimulation. Soe Meh and Ywi gave some traditional massage and we monitored his BP and temp regularly. Our efforts yielded an increase in points of his BP with each passing hours until we eventually landed in the 80's.
For those who know it may seem I have gone MIA the last 4 months. Often the Karenni ask me, "Where you been, Jen? Long time no see". It is beyond anyone's comprehension to try to explain the lengths it has required to oversee Phray's care in a system of systems intended to care (i.e. social services such as supplemental nutritional assistance program, medicaid, PCPs offices, hospitals and the like). I have spent countless hours "policing" these systems like an old maid with a broom stick in hand sweeping out the riff raff from the porch.
Let me highlight just a few of these examples here for purposes of documentation if for no other reason- as I have been told to document everything (especially now that Ywi and I are under the scrutiny if APS):
________________________________________________________________________
Example # 1) During Phray's last stint at the Medical Center we were sent home on an increased dose of a BP lowering medication, not previously prescribed to him as an inpatient. He bottomed out immediately. We made a wise choice to tailor back that dose to his original dose he was getting prior to admission. Simple common sense saved the life of Phray. To Ywi's credit- as he is the one who caught the discrepancy.
Example #2) The ordeal of ordering a simple trapeze bar, resting arm splint, gel overlay mattress cover, bed half rail and larger size wheel chair- This simple task took Fairview Clinic more than two weeks to produce the orders for. Which I, myself eventually picked up and hand delivered to MedEquip (Kudos by the way to MedEquip who have been outstanding in their warmth, care and customer service). These materials are essential to Phray's recovery in enabling him to regain strength.
Example #3) The Modified Barium Swallow Study- Again, during Phray's last stint at the Medical Center. Phray was to have a MBSS. Ywi and I left to do some errands. Both our numbers are listed in Phray's chart and early on Ywi and I made sure Ywi was POA for his Father and presented this paperwork. Given that Phray sustained a major stroke and TBI (permanent TRAUMATIC BRAIN INJURY) this was an absolute necessity. At some point when we returned home, we inquired about the results of the MBSS and were told that it was inconclusive because Phray was "non compliant". I raised the issue that never once was one of us contacted to assist. Phray often goes back and forth at home into states of confusion and sometimes becomes very toddler like. I can see how someone in this frame of mind who has never known previous Western medical care could certainly be non compliant. My expectation is that hospital staff are trained to contact next of kin and emergency points of contacts and POAs listed in the charts of such patients. That never happened.
Example #4) Ywi's foodstamps- While "policing" our various "helping agencies" I also undertook the task of applying for Ywi's food stamps, since he stopped working to care for his Dad full time to keep him out of a nursing home. This was quite an ordeal. To make a long story short, DCBS received but did not scan the paperwork for Ywi's case in the time allotted for his case to be approved. Because I was smart and anticipated such an error, I saved the mailing receipt and tracking number. I was able to get his case priority and not have to start all over, but not without having to spend over three hours waiting at our local DCBS office for a supervisor.
Example #5) Creekwood Apartment Complex, Bowling Green- Kentucky- Here is where Ywi and his Father have lived the past two years. Our family, Ywi's brother and Sister in Law and two children live in a nearby unit. When Ywi and I need to leave- they provide respite for Phray. Ywi and I spend a great deal of time helping them here in the states as they have been here just under a year. Ywi and I notified the Landlord and the two maintenance workers about Phray's situation. We explained our need for a bottom floor apartment for issues related to quality of life but more importantly for SAFETY in case of an emergency. We were told we would be first on the list for downstairs unit. We explained we did not care about the size as long as it was down stairs and we could get out easily. The Landlord agreed. Regularly, I checked to see if anyone had moved or there was one available. Juest yesterday I learned that a family I know well vacated at the end of June and a new family was placed. I EXPRESSLY asked the Landlord yesterday while she was cleaning common areas if she'd know anyone to vacate a bottom floor apartment recently or if there would be any openings and she EXPRESSLY LOOKED ME IN THE EYES AND LIED TO ME in front of the maintenance workers and who looked to be her husband and young son.
Example #6) FREE bed pads and breifs- Because Phray is incontinent and low income, medicaid will pay for his briefs and bed pads. I tried to arrange this nearly 5 weeks ago when I found out about the program (never mind that it was actually the JOB of the hospital social worker to do so). That "paper" or "order" sat in a stack and was forgotten about… needlessly- again another call from Jennifer Bell raising hell to get Phray's needs met. Because you see every pack of briefs at Walmart that barely lasts a week costs us $11.00 plus tax. I was quite forgiving when the worker apologized to me saying this was her error and her negligence. We all make mistakes. Me too- everyday. We just need to own our mistakes and realize at the end of every mistake is a person and a life and in this case it is Phray.
Here are SIX HARD examples NOT INCLUSIVE OF THE MANY that came in the three weeks of Phray's initial stay at the Med Center at the onset of his stroke- when the language line was never used for Ywi before my arrival (as told by Ywi), when a nurse sent us home with sheets and told us to return the after Phray died or urged us to use end of life Hospice care for his comfort despite a different prognosis from the Neurologist. Were we vindictive people, we could have taken legal action here. Ywi and I NEVER once have felt Phray was destined to die as long as he was off the Fourth floor, where Ywi indicated he felt Phray's blood did not agree. Originally, I thought not to give these institutions names, but THIS is OUR experience and there is nothing to hide and no reason to be coy or political. The TRUTH is the TRUTH.
To say I am struggling not to lose my faith in the goodness of people is a gross understatement. To top off todays news, my $299.00 phone fell from my hands at the top landing of our second floor apartment (which we have been waiting patiently to get out of and into a different unit) and landed face down-smashed- on the bottom tiled floor- with all my pictures and Karenni lessons in it- and I can not really afford to replace it. Likely such an accident occurred because I could not see as tears were streaming down my face when I got the news that an APS report had been made against Ywi and I when those who know Phray and know us KNOW it is Ywi and me and Soe Meh and Ai Phien who have nursed him back to health---- this amazing man- a freedom fighter, father and keeper of ancient traditions and primitive stories- who came home, unable to swallow or move the left side of his body…. Who sat up LAST NIGHT AFTER HIS FAMILY CARED FOR HIM AT HOME AND RESTORED HIS VITAL SIGNS and gave me Karenni alphabet lessons with Ywi.
Any Questions about his Care now?
