Archive for October 2023

Katie Beckett TN to the Rescue!

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When ME finally qualified for services, we were relieved. 

Maybe now she would get the care she so desperately needed. 

I contacted all of her doctors to share the good news! 

It was almost as if I said nothing at all. Once determined doctors, now looked at me as if they felt pity on me. I could not wrap my brain around this. Our primary insurance had been denying the care they were ordering, for years. Why now, would they not be excited we finally qualified for services. 

Help was on the way! Right? 

The first 6 months of Katie Beckett were incredibly disheartening. ME’s nurse caseworker had limited understanding of what ME needed, or simply didn’t understand the Katie Beckett program. 

I cried buckets of tears when she signed on to our case. I felt as if I was reliving the “caseworker guidance” from “Cigna” (AKA what I came to realize was not Cigna, but instead our self funded benefit plan) . I had never been able to get ME anything that doctors in Boston were recommending to other patients, with ME’s diagnosis, and with the new Katie Beckett caseworker, nothing had changed. It was as if ME and I were falling off a cliff, and both caseworkers were there just to say how sorry they were. No rope. No help. No hope. 

I reached out to individuals with the State of TN. Begged them to look into this. Shared my complete mistrust in any part of TN medical health care. 

I was defeated. 

The system had won. 

ME was on high dose pain meds at this time. So externally she looked to be improving. 

I thought oh my gosh, imagine if we can show Boston her improvement. 

Internally I knew otherwise. 

For years, I used a hand held pulse ox to take ME’s vitals of heart rate and oxygen. This was required of me by her psychiatrist. If her heart rate was too low, he did not want her to get her meds that were holding off the severe Catatonia. So daily, 3 times a day, I placed the pulse ox monitor on her finger. Many times she was too Brady to give the meds. I felt very confused as to why they were not approving the IVIG. But I continued to follow doctors orders to a T. 

After reporting to the Katie Beckett program our complete lack of care, they assigned a new caseworker to our case. 

At this time, I was paying someone to come to our house for 3 hours a day, twice a week. Our services for home health were disrupted this whole 6 months, (which I later learned should never had happened) and our sweet Nicole agreed to let me pay her out of pocket. 

One particular day with Nicole there, I needed to just step away from the care. So I got in my car, and drove aimlessly. Not really knowing where to go. I ended up in a parking lot in a shopping center. I don’t even believe I had time to shop. 

While in the parking lot, my phone rang. 

It was our new Katie Beckett case worker. 

I answered the phone, and simply said hello. 

This kind soul on the other end introduced herself. Told me she was ME’s new caseworker for Katie Beckett. 

I listened. Didn’t say a word. 

I remember her asking if I was still on the phone. 

I replied, “Yes, I’m still here.” 

She said more, but I can’t recall a word. 

I just replied, “I can’t believe these lies anymore. I cannot listen to people who are just going to keep doing what our primary insurance did with their caseworkers. I don’t want this anymore. It took me months and months to get these services. And you’re just going to do what everyone has already done. Nothing.”

I began to sob. I could no longer talk. 

Sarah said, “So do you want her services cancelled.” 

The word barely got out of my mouth, “Yes.” 

I had no strength left to fight for my daughter’s life. I was up 24/7 for days in a row, and it was clear that her care had been neglected by many. 

Sarah then said, “Ok. I will let them know. Would it be ok if I come by and meet her? Maybe Tuesday?” 

Again, I could barely reply, “You can if you want. But I can’t do this anymore.” 

Many ask why I didn’t go to another state. 

Other states told me they could not take cases from TN due to something our Governor had signed. 

Even Boston said they could only do what they already had in place. 

At the same time, ME’s doctors began to say things counter to the experts in Boston, that they sent us to. 

Our sweet ME was caught in the middle of bureaucratic red tape, and this was becoming more obvious by the day. 

I told our new caseworker that she was welcome to come and meet ME. 

I then said a weary goodbye, hung up the phone, and sat in the parking lot crying. 

When Tuesday came, i quickly learned that I had a true advocate in front of me. 

I cried the entire time she was here. Others came too. And all I could do was simply let them witness it first hand for themselves. 

Catatonia is an ugly beast. 

And unfortunately there were steps the physicians should have taken that they never made us aware of. 

ME’s new team quickly taught me what should have been done. 

And for the first time, in all of ME’a life in TN, I finally had a team teaching me what should have been taught to us concerning her care, and the neglect of care we experienced. 

Respitory therapists, home health care nurse, our new incredible nurse caseworker, all bringing the information and equipment we needed all along! 

First up, 24 hour monitoring of ME’s oxygen and heart rate! 

No more spot checking, as was wrongly advised to us. 

And the push for ME to get oxygen, that should have been prescribed years earlier. 

This incredibly professional team, all women, were literally there for me as I was free falling! 

It would also mark the beginning of my husband increasingly realizing he’d been misled by many. The struggle to piece that together, with this new team sweeping in each time he was misled, to guide him, was painstaking. 

I just kept relying on these incredible women to get us through this. 

And they did! They 100% saved ME’s life, and mine in the process! 

****Next up… The day our neurologist told my son and I that she “did not know how to read a monitor.” 

“Would Your Wife Really Go to the News?”

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Before we finally qualified for services from the state of TN, a “nurse caseworker” from “Cigna” would contact me concerning ME’s care, or lack there of. Often. 

Every time I turned around, our doctors’ orders were being denied by our “insurance company”. 

On one particular call, (that I took out of the house since my husband was on calls, working from home due to Covid), I was so sad. The “nurse caseworker” informed me ME was again denied care. 

I began to cry. I was devastated each time they informed me. 

I begged for help. Begged her to tell me what I could do to get the help. She clearly stated that there was nothing I could do. (Again, not true, she was obligated to tell me the appeal process. Instead she said to me, “I’d save that appeal process for the treatment she needs”  Again, coercing me to give up. Definitely against good faith laws.) 

I started bawling. I said to her through tears, “Please ask someone. Please, I’m begging.” 

I then added, “We don’t qualify for services. My husband’s income is past the threshold. The state of TN does not have Katie Beckett, and our insurance keeps denying her care.” 

I then said, “Oh my God, this is news worthy!” 

She agreed it was heartbreaking, and said she’d do what she could to advocate for us. 

We hung up. 

I waited to go inside until I collected myself, so my husband wouldn’t worry. I wiped my tears, and straightened myself up. It was not more than a few moments. But I knew I needed to take a moment. 

I walked into our house. 

Just as I walked through the door my husband’s work phone rang. 

He had it on speaker, so I remained quiet so as not to be disruptive to his call. I began to walk to another room, when I overheard this… 

“John, this is N*** C***.”

John said, “Hey N***, what’s up?” 

N*** said, “Hey, Cigna just hung up the phone with your wife. They said she said she’d call the news about your daughter’s care. Would your wife really go to the news?”

John looked at me, as if to ask me if this was true. 

I was in complete shock. 

He said, “Don’t worry. I’m sure she won’t.” 

N*** said her thank you. As if to say, we appreciate you for keeping her under control. 

I knew my place. I knew what I was just told to do. 

John hung up the phone. 

That was 2019. It was right after we nearly lost ME in November of 2019, and her recovery was going to take up to a year. Recovery that I would have to do nearly all alone, due to denial of care.  (Our “insurance” approved I believe it was 20 minutes of OT, once a week.) For a child recovering from near death, with a disorder that was not addressed fully, this was horrific. 

That was the first day of the end of our marriage… 

That was the first day that systemic denials nearly destroyed our family. 

And absolutely caused ME pain and suffering. 

Along with pain and suffering on me. 

Little did I know what was to come. 

This would be our smallest battle. 

We were just too naive to know it. 

Grover, today I celebrate you!!!!!! 

We made it baby! 

34 years and going strong! 

Happy anniversary to my forever boyfriend! 

Love won! 

The Lessons We Learned While Saving Our Daughter’s Life

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The journey that unfolded as we fought to save ME’s life was one we never expected. We were just your average family, raising kids, working hard, and trying to bring good to the world where we could. Nothing out of the ordinary. 

Nothing out of the ordinary until, we were caught in the middle of bureaucratic red tape trying to get ME much needed care to save her life. What we witnessed during this process was horrifying and traumatic. 

Thankfully, we had people guiding us.  They helped us understand what we needed to do to cut through this bureaucratic red tape, that society had placed ME squarely in the middle of. 

As we approach the healing part of this journey, we want to help others going through what we experienced. Our hope is to educate while we tell our story. 

Follow along here as we teach, guide, and one day soon announce our book we are writing. We hope these efforts will help in our continued healing, while we help others.