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.”
