The Beat Goes On: C-Diff, Seizures, Fevers and Blood Clots.

Patrick and I are hunkered down in a foxhole together at Cooper, trying to find an escape that doesn’t involve getting beaten down by anymore shrapnel. Yesterday, it seemed that we were finally going to be able to take a breath and relax. We were wrong. We had a plan of action to combat the pending infection. That plan was about to backfire. We were told that Bacharach had accepted him for acute inpatient rehab, and were just waiting on approval from his insurance. They were about to deny us. Everyone seemed certain he would get transported that day to the facility. In reality, he wasn’t going anywhere. 

First came the bomb blast of denial from the insurance company. They were only approving “sub-acute” care in a “skilled nursing facility,” which is doctor speak for an hour of therapy a day in a nursing home. And while his insurance does cover acute and outpatient at Bacharach, it does not approve sub-acute, which essentially meant that Patrick could not be transferred back into the hands of his amazing team. He’d have to go home or go somewhere new, where he’d mostly lay in bed like he was now, and I’d have to “hawk” everyone to make sure they were doing their jobs. I knew we had to appeal.

Our Neurosurgeon told me that he would make a peer-to-peer to call as a first-level appeal.. which means he would call the doctor refusing the request for a pow-wow. A few minutes later, he called me to convey that he was put on hold 25 minutes, and then dumped into a voicemail inbox. He asked me to raise some hell. And raise some hell, I did.

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I am not a combative person. But standing there, in that damn hospital, 6 days into what was supposed to a fairly simple procedure, looking at Patrick so exhausted… I felt my maternal instincts kick in, and a rage began to build.

I was put on hold 3 times with the insurance company. I went ballistic on the fourth person I spoke with, demanding an appeal. I told the 5th person I spoke with, that if this was not appealed, and my boyfriend fell on his head and died, I would call CNN, Fox news, write the newspapers, and put a video on Facebook revealing their negligence. I had spent 1 hr 20 minutes on the phone, getting bounced from person to person, but after making that statement, I suddenly was speaking with a supervisor.

By 6 p.m I had a screaming migraine. I escaped to get some Advil in the gift shop, when I got a call from the head of the appeals department. For the first time in 20 months, I felt like I was talking not to a soulless robot, but a human being. She read the report from the PT to me and I was floored; the way it was worded made acute therapy impossible. I had no idea who the PT was; she had not consulted with me, and I had not been there when she evaluated. There was no mention of his regression in the report.

I poured my heart out to this woman. I told her that I hadn’t reached the social worker despite leaving her multiple messages. Something must have moved her, because she told me that rather than file the appeal (which she felt confident would be denied again), she recommended I get two addendum’s faxed to her; one from the neurosurgeon and one from PT.

And so our 6th day at Cooper Hospital ended. I knew I was going to have to go in the next morning with my guns blazing to get this appeal done. Wound up and wired, I slipped into a clumsy sleep around 2:30 a.m, which was restless at best.

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Catching some zzz’s where I can.

I woke up around 6 a.m and clumsily picked up my phone, only to see the following messages:

(4:30 a.m ) Hi,

(4:31 a.m ) I just had a nasty seset even

(4:32 a.m ) seisure. i mean seizure.

(4:33 a.m ) It felt like a grand mal.

(4:36 a.m ) Before they were checking my temp it was so high

(5:15 a.m) I am laying in a bedpan. I’m dirty.

(5:45 a.m) Hi. I’m in the ICU. I have a fever. I need you.

(Btw, Patrick has never had a seizure and has been on seizure meds preemptively all this time.)

My vision narrowed and my heart was suddenly pounding out of my chest. I could hear the sound of my breath in my ears loudly, like the gallop of horses. Ba bump. Ba bump. BA BUMP. BAAA BUMPPP. What the hell was happening??? FEVER? SEIZURE?!!?!?! ICU!!!!!!!?!?!?!??!?!!?

There was nothing left in my luggage that was clean. I threw on dirty clothes, and drove as fast as I could to the hospital.

I hurried into the ICU, feeling a lightness in my head and a cement feeling in my feet. He was not where they said he would be, and I as I searched each bed, the image of lifeless, injured, intubated bodies and devastated loved ones flooded my eyes, causing me to remember things that I had worked so hard to forget.

When I found Patrick, his face said it all. He looked so broken. He was laying in a bed pan. He was sick with a stomach virus that was ripping through him. His eyes were so tired. I didn’t know what to say. “My love...” I said, my lips trembling. “I’m not having the easiest time,” he said.

Today has been our most exhausting yet, with visits from neurology, infectious disease, & neurosurgery, MRI’s, cat-scans, an EEG, blood work, staples removed, cultures of urine & stool, neruo-exams, physical exams…Patrick has been poked and prodded by everyone. PT & OT came by and tried to get him into the bathroom. He has regressed from a “min-one person assist”, to a “mod-two person assist.” It was tough to watch.

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My poor, sweet man.

I was informed by the staff that last night he had a 102.7 fever, and then had a 10-minute, general partial clonic seizure, which was serious, and landed him in the ICU. On top of the fever, he had the runs & stomach pains, so they checked for “c-diff”; a common infection caused by empiric antibiotics. They were also concerned that the infection under the scalp, or an allergy to antibiotics could be causing the fever too.

Doctors came, evaluated and gave their prognosis. Then other doctors came and gave conflicting prognosis’s. Back and forth we went. One second it seemed the plate would come out. The next, it seemed it wouldn’t. One moment they were telling me that they would put him on a 3rd seizure med, and an hour later, the head of Neurology said she didn’t think he’d had a seizure at all. His cat-scans came back negative for signs of raging infection that would cause a fever. His chest x-rays came back clear too.

Then they found a new blood clot in his leg from all the damn laying around…..

*(and then Patrick needed the bed pan again)*

Then the put him back on blood thinners, after being off them almost a year….

*(and then Patrick needed the bed pan again)*

Then he tested positive for c-diff infection of the colon and bowels. (Think of the worst stomach bug you’ve ever had – and how many hours you’ve spent in the bathroom. Now imagine that situation with a TBI, limited mobility, drugged up on pain killers, and recovering from major surgery.)

Then they started him on another antibiotic (oral) to treat it…

*(annnnnd then Patrick needed the bed pain AGAIN)*

Then they decided to move him from the ICU…

*(and Yep. You guessed it. Bed Pan)*

And so it was all day long.

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Eff this joint. Seriously.

The good news, and yes, there is good news… is that they caught the blood clot, the c-diff and the fever while he was still in the hospital. He also has a great team and is in good hands.

And I have one more piece of good news. Remember that appeal process with the insurance company? Well that wonderful woman, who I was on the phone with last night, called me this morning and told me  that Patrick had been approved for 7 days of acute in-patient therapy!!!! The peer-to-peer call had been a success!!!

“Patrick has a real angel watching over him,” she said.

“Yea I know,” I said. “We have hundreds of people praying for him. Tons of angels.”

“I was actually talking about you,” she said. “You’re his angel.”

“Oh,” I said. “Thanks.”

“I’m serious. Your passion moved me. I told my husband how our conversation had made me miss my days working in nursing. And you’re threat to go to the news companies? That flagged your appeal and got it on a supervisors desk within minutes. You’re a great advocate and he’s lucky to have you. The peer-to-peer did it, but lets be serious: that wouldn’t have happened without you advocating to the doctor, to the insurance company, and to me. You kicked some ass.” 

I hung up the phone and felt my mouth upturn into a smile.

After surgery, an infection, IV antibiotics, a blood clot, a seizure, a high fever, a c-diff colon infection and a flipping trip to the ICU…all I can is this:

Damn it feels good to be a gangsta.

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Advocacy. Rock it out.

 

 

 

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