My daughter Stacie is in the hospital in the state of Arizona- Phoenix area. She’s approximately two weeks out from a major spine surgery where her morphine pump was replaced due to catastrophic failure after a car accident the previous year. The surgery was, in all opinions, EXTREMELY successful. Approximately a week after returning home to recover,

Stacie was delighted to find that her CRPS pain was registering somewhere between four and six. That is the absolute lowest it has been in nearly a decade. around this time Stacie developed a seroma, or fluid pocket over one of her incisions. It showed no signs of infection, though it was about the size of a half of a volleyball right on the base of her lumbar area. Stacie‘s father and I live in Georgia and we were delighted to hear of the improvement. This has been 12 years we have watched our daughter continue to 5 yards and battle this horrendous disease. Stacie is strongest person I know and handles these types of surgeries and events fearlessly.

She has had over eight spine surgeries and over 100 other operations related to her CRPS. On Sunday evening Stacie experienced a temporary but terrifying moment of paralysis down her left side when she bent her knee getting up from her bed at home. She became incontinent at this time as well and experience expressed to her wife that she was having a horrific headache and felt as though something of change in her head and she felt like she was possibly having a stroke. Stacie’s wife, Holly, and her though this was extremely alarming chalked this up to possibly a pinched nerve or something of that naturebgiven that it was brief and felt possibly about the seroma that had formed over one of her incisions was pinching a nerve causing the symptoms. The seroma was approximately the size of half of a volleyball and sat directly at the base of her spine in the lumbar region. This happened in the middle of the night and do to years of medical trauma, stacie declined Holly‘s request to go in through the ER and felt that it was something worth monitoring.

Stacie was trying to focus on the fact that her CRPS pain had dropped so greatly and truly felt that once the postop pain subsided she would finally begin living instead of surviving in a bed 23 hours a day.

For those not aware CRPS also called RSD, reflex sympathetic dystrophy. Is the most painful condition known to man. According to the McGill pain scale and decades of research. Stacie also deals with epilepsy and because of the constant stress and trauma on her body also has non-epileptic seizures. The difference between the two is that an epileptic seizure has a an electrical disturbance in the brain where a non-epileptic seizure though still completely a seizure has no electrical disturbance but is the brain forcing the body to convulse and essentially shut down in order to protect her.

After Stacie began experiencing paralysis on her right side though it lasted less than a minute, stacie and Holly knew that this was no longer something that could be waited on and decided that it was absolutely the best course of action to go into the ER and get checked out.

During these two events of paralysis Stacie also experienced incontinence and the inability to hold her bowels. Holly took Stacie to a nearby dignity health standalone ER. They spent hours rigorously testing and trying to get to the bottom of what possibly be going on. A CAT scan was done within the first three hours of Stacie being in the facility and They were informed that Stacie likely had something called Cauda Equima Syndrome. Simply put this is a condition that is a surgical emergency as it largely is something compressing on the spinal cord, nerves and the roots. If surgery is not done within the first 24 to 48 hours the paralysis can spread and the symptoms can be permanent.

Dignity health spent the next six hours advocating, explaining her case and pushing for a hospital with a neurology & surgical team to take Stacie‘s case and perform the surgery.

Stacie was notified at about proximately 4 AM that Saint Joe’s hospital had accepted her case & were waiting on a bed to become available they were putting it as a urgent. this was good news at Saint Joe’s is one of the top neurological hospitals in the state. About 30 minutes later Stacie was informed that Banner Desert had reached out and had a bed open no, were briefed on her case and could accept Stacie as a patient.

An ambulance transported her to Banner Dsert ICU where she had an exam with both the hospitalist and the NeuronSurg. PA on duty. She was told that the neurological surgeon had been paged and was on his way and to expect to be in surgery within the next couple hours.

We are unsure of what changed or shifted but five hours later the same neurological surgical PA came into the room I told Stacie they would not be doing surgery because of liability And that they were unaware that Stacie even had a pain pump. This is absolutely insane given the entire situation surrounding Stacies symptoms and recent surgery. And that they CHOSE to except cc as a surgical patient.

The PA at that time told Stacie that University Hosp had doctors who were extremely familiar with pain pumps and had accepted her case and that she was going to put in the paperwork and to hang in there. She was reminded to stay NPO, in preparation of having a surgery At university.

About 30 minutes later the same PA returned with the phone on her ear and asked Stacie if she were completely paralyzed YET. PA looked dumbfounded. Stacie said no but my thighs groin and saddle area are all numb and I have limited use of them. The PA left on the phone and returned 20 minutes later to tell Stacie that university declined her transfer and relayed to the PA (Michaela ) to let me know to discharge herself AMA and head over to them when she became fully paralyzed.

Obviously Stacie was shocked by this extreme change in treatment and care plan. She asked the PA if this was normal and if the PA advised her checking out AMA while experiencing spinal/neurological symptoms.. The PA was in shock and said that she had never seen anything like it and that she literally didn’t know what to do but would relay the information on to her higher-ups and said “ this is flipping insane I’ve never seen anything like this in my life. I would absolutely not take that advice“

A few hours later Stacie was transferred from the ICU to the PACU unit where Michaela visited again, after some hours, to inform Stacie that neurological surgery had discharged her as a patient and that they were declining to take on the liability of intervening for Stacie .

Despite involving multiple charge nurses and for DAYS requesting a patient advocate Stacie and Holly were both repeatedly told that this hospital simply did not have patient advocates. Despite one of the ICU nurses identifying herself and Stacie as a patient advocate.

Several charge nurses have attempted to intervene and behave as a patient advocate for Stacie - recognizing the need for care.

in the PACU nurse S took her concerns over Stacie’s lack of care to the hospitalist on duty that night.

She relayed to Stacie that she was told it was simply too high of a liability for the hospital and to let Day shift deal with it.

In the morning Stacie was transferred to the Nuro floor. While that seems like surely the best place for Stacie to be it has only further become a nightmare. Stacie has begun having seizures & is now experiencing paralysis in her left leg, her right toes, her trunk/saddle area, groin and thighs. She is also incontinent and unable to control any of her bladder and bowel function.

Holly and Stacie have asked for days hospitalist after hospitalist simply what is the plan of care for Stacie And have largely been told again and again that simply there is no plan. That their plan was to transfer her out of there and since they were running out of avenues to transfer me to there simply was no plan except to continue to pump me full of anabiotic‘s hoping that this was some type of infection in my spine.

Stacie‘s white blood count has consistently this entire time been in a safe/normal range. There is not any indicators that this is a infection in the spine. Holly has voiced her concern over multiple issues matching the symptoms with the obvious being Cauda Equina, stroke in the spine, the battery that was left inside last year rupturing, or possibly an MS flare (Stacie has been dealing with a differential diagnosis of MS but has not been fully Diagnosed)

While a few sat time charge nurses seem to be advocating for Stacie, she and Holly have been told nearly a dozen times that they should discharge Stacie AMA and go from there.

In fact Stacie was also told that Neuro had been monitoring her closely over the last 48 hours (and popped in while she was sleeping ) only to find out that they literally do not have neurologists on staff in this hospital, with the exception of one who rounds for stroke patients.

A cart was wheeled into Stacie’s room on Friday I believe and she was told that she was having a consultation with the neurologist to figure out what was going on.

There was a camera on a cart and it was a zoom call. The cart wasn’t able to back up enough to capture anything more and Stacie‘s knees on up because of a wall in the room.

The doctor instructed Stacie to touch her finger to her nose and to repeat this bilaterally.

she was able to do that. The doctor then asked Stacie to wiggle her toes and Stacie articulated that she was experiencing paralysis in her left leg from her knee down to her toes. Despite having some feeling she has no ability to use her leg/Foot, That “doctor” instructed Stacie to discharge herself AMA and head to Texas to discuss the original implant of the morphine pump seven years ago.

Stacie does not lack the ability to question or challenge things that seem out of place and she immediately pushed back and said to be clear Dr. you are advising me as I experiencing spreading paralysis and the continual loss of my faculties - both bowel and urine with other alarming symptoms that point directly to neurological/spinal symptoms that I should simply get on a plane and head to Texas to speak with a doctor who’s care that I’m not even under? What exactly do I let this pain management doctor know when I get there that the hospital discharged me with paralysis and recommended I hopped on a plane to cross country ?

She then told aStacie that she had disconnect the call because she had a patient of higher needs that was dealing with an acute stroke and she immediately disconnected the call.

An ICU nurse, C, was in the room for the entirety of the call and told Stacie that call ludicrous and that she was so very sorry that Stacie have received such incompetent care in that moment. The charge nurses were supposed to gather and come up with a plan after they continually saw the back-and-forth over what doctors are telling Stacie and the fact that there’s simply was no plan.

As the weekend has hit there simply is no one advocating for Stacie other than Stacie and of course Holly. Holly has been unable to be at the hospital full-time the majority of the time given her work schedule and the fact that she exhausted her PTO the two weeks prior helping Stacie recover from her spine surgery.

Such an impossible situation to be in.

For the week Holly got a hotel nearby so that she could be available & nearby to Stacie. Stacie, like most patients, it’s treated wildly differently when she is the only one in the room. Holly was able also witness a constant display of incompetent and negliagent care. They were able to record multiple nurses telling Stacie and Holly that the doctors in this hospital were incompetent and that they were simply protecting themselves and not Stacie‘s best interest.

Stacie‘s paralysis continues to spread and she is now having loss of vision in addition to the continual loss of bladder function. Stacie CRPS pain continues to climb out of control and as a result of that she has begun having seizures again after being seizure free for the last six months plus. The longest in seven years. Stacie‘s paralysis continues to spread and her vision is affected we feel strongly that there is simply no one truly advocating for Stacie at this hospital.

The other hospitals also will not except her as a patient and have communicated directly to the hospitalist who told Stacie that this was also due entirely to liability. Stacie believes this is because they initiated her transfer as a surgical transfer as opposed to simply Neuro.

Stacie and Holly need funds to be able to hire an independent patient advocate outside of the hospital system to help save Stacie‘s life and mobility. We haven’t been able to make much movement because it is the weekend but we were connected with the Arizona patient advocacy group and have found largely that the type of advocate Stacie needs would likely be in the range of $200-$300 an hour plus any other type of interventionary expenses. Given how wildly complicated Stacie‘s case is at this point and knowing that I cannot be there myself to advocate for my baby. I am asking for any help anyone can provide.

All money raised through this campaign will go directly to hiring and sustaining a patient advocate andor attorney for Stacie

She is exceptionally tough and trying to remain in fighting spirits but I know that she is losing her fight. CRPS alone has a death rate of nearly 70% at the five year mark due to just how horrendous the unrelenting the pain is. Stacie has pushed through and is in year 12 with a beautiful wife and gorgeous adopted son. I know that I am her mama, but I cannot tell you enough how much this world needs a person like Stacie.

Please help me help her.

(Stacie wrote this to help expedite things)