My Mom has been in the hospital for 17 days.
We were only expecting 3 (I wonder if this is how Gilligan felt?).
I am fucking miserable.
This past spring, after months of stabbing, electric, drop-you-in-your-tracks pain in her jaw, Mom was at long last diagnosed with Trigeminal Neuralgia. This is a condition in which the trigeminal nerve that supplies sensation to the face (there’s one on each side) is compressed by a blood vessel, causing it to fire randomly and uncontrollably. Meds made it manageable for awhile, but after an episode in early November put her flat on her back with a Percocet prescription, we decided it was time to take the next step.
There are several surgical options. Most of them relatively non-invasive, but they don’t solve the problem, they just damage the nerve to keep it from firing as much. The trade-off is permanent numbness and likelihood of recurrence. The best long-term solution is MicroVascular Decompression, in which the blood vessel is actually moved off of the nerve, thus correcting the cause of the pain. It’s also the most invasive option, as it involves drilling a hole in the skull and opening the dura (waterproof brain covering) to access the nerve. However, after interviewing a highly respected neurosurgeon who performs about a hundred of these per year, we decided to go for it. The TN pain had really taken over her life this last year, and I was worried that depression was starting to settle in.
Her MVD was Friday, November 16th. It was a success, in that they found a large vein compressing the nerve and were able to cauterize it. However, post-op has descended into the 9th circle of Hell.
She was in excruciating, no-meds-are-working pain for a good 30 hours after surgery, dry heaving every 2 hours so hard that her incision would leak. Saturday evening, she finally started responding to pain and anti-nausea meds enough to sleep on and off.
By Sunday, she still couldn’t tolerate anything more solid than jello, but I figured she was making slow progress. I was a little alarmed when she started occasionally saying weird stuff (it sounded like sleep-talking, but she seemed awake), but after the nurse ran through a series of questions to make sure she was aware/coherent, we decided that maybe the morphine was just making her a little loopy.
My poor brother spent the night with her that Monday night when things clearly took a turn for the worse. Her pain was escalating again, she alternately begged for help and mumbled stuff that sounded like absolute dementia all night, and apparently at 3AM she ripped off her hospital gown and threw it on the floor because she was hot.
This report frankly scared the shit out of me.
The doctors did another CT scan and found that she had a buildup of fluid/brain swelling (I forget the technical term — hydroencephaly?), which apparently happens about 1 in 20 cases. Yay. So Tuesday morning, they drained about 4 vials of fluid out of her head via lumbar spinal tap. This helped tremendously with the headaches and nausea and crazytalk, although now her lower back was in agony from the lumbar puncture.
Wednesday they diagnosed bacterial meningitis (don’t open that dura lightly, folks). After several more spinal taps continued to show dangerous levels of pressure, they took her back to the OR Thursday (Happy Thanksgiving, dammit!) and installed a temporary ventral catheter in her forehead in order to drain the fluid directly from the brain into an external colostomy bag. Two holes in the skull now — there must be a whiffle ball joke in there somewhere.
While it did resolve the hydroencephaly, her post-op was once again painful enough to have her moaning and crying and writhing on the bed, with a new twist. My brother and I had to alternate shifts pinning her shoulders down every time she tried to rear up into a new position, lest she yank her brains out through her forehead via the ventral catheter.
That night when I left, she was having more and more difficulty answering questions, which I attributed to pain. I was wrong, as by Black Friday morning she had lost the ability to speak or respond to verbal commands.
The doctors were puzzled, as the latest CT scan looked normal and the bacterial infection was nearly under control at that point (that afternoon her spinal fluid tested clear of bacteria). They eventually theorized that the residual inflammation from the infection was causing brain seizures that affect the areas of communication.
So they hooked her up to an EEG, noted some instances of “epileptic discharge,” and decided to move her up to ICU where they could monitor her more closely. There are pros and cons to ICU — on the plus side, the surveillance of machinery (IVs, monitors) is better. On the cons, they have strict visiting hours, so one of us was no longer able to be with Mom 24/7.
For 3 days, there was no change. She was still completely unresponsive, although her pain wasn’t as intense. She was in wrist and chest restraints to keep her from disturbing the Brain Drain and the EEG electrodes. I feel like we were violating the Geneva Convention, but I understood the necessity, as she was physically still quite strong and tries to move a lot when she’s uncomfortable.
For days, nobody could give us concrete information on what was happening or why. It gradually became clear that there was disagreement between the neurologists and the neurosurgeons about whether or not she was indeed having seizures. Meanwhile, she was starting to show slight signs of responsiveness, holding up 2 fingers and occasionally slitting her eyes open when asked. Tuesday the 27th, it was finally established that Yes, She Is Having Seizures You Twits, and her anti-convulsant dose was doubled, plus another anti-epileptic was added.
2 days later, she opened her eyes, looked at me, and said, “hey sweetpea.” I held it together. Somehow.
For the next 2 days, she made slow, painful, and as-yet-incomplete progress in remembering the pieces of her life. For awhile she thought we were back in Ft. Walton. She gossiped about the odd things that had happened in dreams, thinking they were memories. But when she was able to name her grandchildren and their birthdays this past Friday night, I started to hope.
Meanwhile, she continued to divert 100 cc’s of spinal fluid into her colostomy bag every day. The neurosurgeons wanted to place a permanent shunt Friday morning, but I begged them to wait a few days before drilling yet another hole in her skull and making her poor, battered brain vulnerable to infection again. Good God, she’d just woken up after a week of seizures. Maybe now her body could remember how to regulate the pressure on its own.
It was a nice thought.
She’s having the shunt surgery tomorrow (today, I guess it is now. damn insomnia). Late Saturday morning they clamped the ventral cath to see if the spinal fluid would regulate itself, and by afternoon, it was clear that the permanent shunt is needed. She started losing alertness and babbling nonsense and suffering a terrible headache again. I left as they were taking her down for another CT scan.
I went back to the hospital today, expecting to have a nice chat with her and assess her journey back to reality, and instead I found her highly unresponsive again. The Brain Drain was open, but she was very hard to rouse, speech was slurred, made no sense when I COULD understand her (she said she was doing commercials, *snort*), and I’m not sure she was really aware of my presence. I had to leave after 3 hours (Pokermon and the kids have a cold), and they were drawing bloodwork to look for infection and prepping for yet another CT scan and possibly another EEG.
I called back in the evening, and the nurse said she was “brighter” again and had eaten some jello and was at least answering questions, if not always correctly.
I don’t know what the fuck to think. I’m so miserable right now. I feel like I’ve lost my mom, but I can’t mourn her, because she’s right there in front of me. But the woman who walked into that hospital with me on November 16th — the one who runs a church office with efficiency and flair, and worries too much, and spoils my kids, and plans everything down to the last exhausting detail, and snuggles with her German Shepherd while she watches old movies — that woman is nowhere to be found, and I don’t know when — or if — I’ll see her again.
I hate this.