The first half of my Mother’s Day was spectacular! Breakfast in bed with all my favorite breakfast foods. Some awesome gifts from the kids. John got me The Hunger Games and 4 hours of quiet time to read. He cooked a fabulous lunch. Everyone was in good spirits. The kids were putting the final touches on a gift for Grandma, and I was getting out of my PJs. We would head up to the nursing home and spend some time with my mom.
The phone rang.
It was the nursing home. Mom’s blood pressure was high, and two extra doses of medicine hadn’t touched it. She was in an ambulance on her way to the Emergency Room.
We get to the ER. The doctor was already examining her. I wonder if the kids will be doctors. They’ve seen so much “medical” stuff at really young ages. We have no family in town, so they tag along for most everything. Thank goodness for Nintendo DSIs. Where was I? Oh yes, the doctor. He suspected brain swelling. He ordered labs and a scan of her brain. He called a Neurosurgeon in to consult. You have to understand something. Mom’s cancer was Stage IV when she was diagnosed two years ago. We have never seen a surgeon. There are some specialists I wish we would have pushed to see. I can hypothesize all day long, but I’ll never know why Mom didn’t get the whole team-of-doctors approach to her treatment. Nobody really thought she would live more than a couple months, and certainly not two years.
Wow, I am rambling. Lack of sleep can do that. So back to the ER. Mom had too much fluid on her brain. That fluid was pushing on her brain. Her brain panics from the pressure and tells the heart to send more blood. The blood pressure goes up. The pressure on the brain increases. The brain panics. Ok, you see the vicious cycle. This happened a year ago. The pain was brutal. Even narcotics didn’t touch the pain. Thankfully, that time steroids worked. This time, they probably wouldn’t. Mom was admitted to the hospital.
The next morning, after 3 hours of sleep, I met with the Neurosurgeon. I was given two options. 1. Send her back to the nursing home on high doses of narcotics to keep her comfortable until she passes away. 2. Place a shunt in her brain to drain the excess cerebrospinal fluid (CFS). So I talked to family. I actually consulted more family than usual. I have Power of Attorney and the final say, but good grief, who wants that burden to oneself? I even talked to a friend who is a Hospice Nurse PRactitioner (I probably butchered her title).
Option 1 Narcotics: I would like to go this route. I want Mom comfortable. Peaceful. Pain Free. Not poked and cut. This is the norm for end of life. And I recognize we’re getting there. And I would be fine with that if I KNEW it would work. The big problem is narcotics didn’t work last time. Her mental state was such that she wasn’t showing pain when painful things were done to her. Was she experiencing pain but her body couldn’t communicate it? I really don’t know. And it made me VERY uncomfortable to think she would be in pain and we wouldn’t know or we couldn’t alleviate it. As I told a friend, I felt like there would be a special room in hell for me if I knowingly let her suffer excruciating pain. The doctors thought she would pass away in a few days. Since they have been dead wrong on predicting her death for two years, I couldn’t really count on the idea of her suffering for a few days and then it would be over. What if she was still here in two weeks? Two months? Two years?
Option 2 VP Shunt: A shunt would relieve the pressure in her brain, thus the pain. It would lower her blood pressure. All measures that would make her comfortable. In a normal situation in which the swelling was new, a shunt might offer improvement in body control, speech, continence. The chance of that in our situation was around zero. A shunt would likely extend her life. It would mean more tough choices like this down the line. Pneumonia. Problems with shunt. Feeding Tube blockages. How far do you go to treat things? What is comfortable, moral, or just plain cruel?
We decided to go forward with the shunt. Trust me, I didn’t take this lightly. I wrestled with this. I cried more than I care to remember. There are no good choices here. In the end, I made a choice that I felt I could live with. We’ll never know what the other road would’ve looked like. We can’t go back. I know I did my best to make sure Mom suffers the least as she completes her journey on this earth. Some disagree with me. That’s ok. I completely understand. I hope you won’t judge me. I certainly won’t judge you when you’re making these choices for someone you love.
Oh, and to clarify, I strongly considered what Mom’s wishes were for treatments and end of life stuff. She never was the end-it-all-fast-no-life-support type. In fact, I’m probably less aggressive than she wanted. But she didn’t get to see what this looks like when we talked about this…back when she still talked and drove her car.
So what happened, you ask. The surgery was last night. Anesthesia took about an hour to set her up. Brain surgery requires more stuff than say, ear tubes. The surgery itself was about an hour, and recovery was a little over two hours. The surgery went well. Mom came off the ventilator immediately. There was a 20% chance she never would, very high for a surgery. The nurses were very surprised and pleased that Mom was more alert and responsive than prior to surgery. Remember, we expected pain relief, nothing more. She was moved to the surgery floor instead of the Intensive Care Unit (ICU) as planned. When she arrived in the room, I asked her how she was feeling. She opened her mouth and let out a series of growls and groans, the first sounds I’ve heard in a while. Later I asked if she was okay, and she whispered, “I don’t know.” Speech! Words! A Phrase! She moved a leg a little, winced and grimaced. She swallowed her spit. All very good signs. And her blood pressure was normal. Normal, I say!
2:00 A.M. Blood.Everywhere. Her head incision was bleeding like crazy. I’m not good with this. Never was. Three nurses wrap her head and give her morphine. Her blood pressure has been elevated since then, but nowhere near where it was before the surgery.
10:00 A.M. She’s still bleeding. I finally remember that she’s a bleeder. Her Central Line once required three days of sandbags. Why did I forget this? The doctor is on his way to put in more staples at lunch. I think we’ll be here another day. Please let us be here another day.
How’s the cognitive progress? Well, she regressed. She’s more alert. She tracks you with her eyes. But that’s all. The Speech Therapist said this was normal for brain surgery. Right after surgery, you see big progress. Then the swelling sets in, and you regress. Hopefully in several days, she’ll start making steps forward. But because we saw things like speech, movement, swallowing….there is a sliver of hope.
And this is my mom. Oh how she loves to prove doctors wrong! But if she doesn’t, I’ll certainly understand. She has fought this fight with valor. We’ve all had our weak days, but on the whole, she’s been strong.
Thank you for all your prayers. Thank you to the friends who’ve taken our kids. Thank you for the visits and texts. Thank you to my hubby who brought me clean underwear and deodorant. Thank you to God for giving me sanity through all this and hearing my literal cries of frustration and confusion.