The Whole Story: Part Nine - The Unimaginable

    When you have to work with medical insurance a lot, sometimes they end up giving you a liaison. I have one of these, her name is Karen. I had a phone call with Karen sometime shortly before or after my first brain surgery during which she shared with me some of her own personal experience. She also had an issue with her brain that required surgery. She related to me a story about her post op where the doctor asked her to touch her chin to her chest. She looked directly at him and asked, “Is this really a best practice?” Picturing this interaction definitely made me chuckle. I guess this is something you would expect an advocate to ask, even though this is a fairly standard test for meningitis.

Returning to where I left off in my last post, Michael had just taken a look at my incision and said, “Uh-oh.” He had parted my hair and seen quarter-sized goopy white patch next to my incision. Knowing this wasn't a good thing, we immediately called neurosurgery and after a lengthy conversation and sending pictures in, they decided it was best if we came in so they could check it out themselves. So, we were off to the city!

It was Katharine’s day off, so we saw Lucia, another of the neurosurgery PAs. I believe she had come by my hospital room with one of the neuro resident teams when I was there before, so she had a familiar face. She wasn’t quite sure what to do with our situation. She swabbed the infected spot, then cleaned it up. Wanting a second opinion, she called the in office neuro surgeon to take a look. He took a peek, said, “hmm,” and started to take me through some tests. When he got to, “Can you touch your chin to your chest?” Karen’s story jumped into my mind. Of course I knew that it was a standard test and I needed to do it, so I complied, but sure enough, right when my chin touched my chest, my incision opened up and fluid began pouring down my back. I had a CSF leak.

CSF, cerebrospinal fluid, is the juice that hydrates your brain. Because of my EDS it was a much higher risk for some connective tissue to tear during the surgery, or for an incision to not seal, causing it to leak. It's pretty critical to take care of these leaks right away, because any infection that gets introduced into the fluid could work its way back into my body, and ultimately into my brain. I likened this leak to a pregnant woman's water breaking in the emergency room. Once that happens, they have to keep you!

Lucia got on the computer and found a room for me and then instructed us to head down to admitting where we could check in. I don’t think they know upstairs how things work downstairs because when we got to admitting they said there was still someone in the room waiting to check out and then the room would have to be cleaned. It would be hours before the room would be ready. Because I had eaten at 3pm on the way to the hospital, they would not be operating on me that day, so we headed to the cafeteria for dinner. When we came back, the room still wasn’t ready. Now mind you, Lucia had just put a gauze pad on the wound and a gnome-looking hat on my head to hold it on. So they had me wandering around the hospital for hours with my brain juice leaking out of my head. 

    We settled in to wait in the lobby across from admitting. After a bit, my oldest son and his girlfriend showed up, I guess my husband had texted them with a list of stuff we’d need for a few days in the hospital. We visited with them for a bit and then they headed home. A little while later, we saw a friend walk by who stopped to visit with us. His wife also had a brain tumor and she was at the hospital for a course of chemotherapy. He had spent the day with her and now he was on his way home to their children. It was nice to see him, and it made me feel less alone in my weird health stuff. Shortly after he left, my gauze pad reached its limit and the CSF began drizzling down my back again. I sent my husband back to admitting to check on the progress and not surprisingly when he said that his wife’s brain is leaking down her back and when would a room be available, it magically was!

When we got up to the room, our nurse was ready for us. She went through all the standard checking you in/getting to know you process. She got me a new gauze pad for the wound, but there was little else she could do. Really, I just needed surgery. It was getting pretty late, so we settled in to try to sleep. Thankfully, they had a cot for my husband. Like the previous couple of nights, I had a terrible migraine that kept me up most of the night. The nurse did what she could to help. She even recognized that the directions on my chart that I could only have Tylenol every eight hours had to be an error since the directions on the bottle say every six hours. In hindsight, this pain was likely caused by hydrocephalus.

Hydrocephalus is when your CSF builds up and creates pressure on your brain leading to headaches, vision problems, decline in memory, concentration, and other thinking skills, and a few other symptoms. They had checked for this in me before, but the way they did it was to compare the size of my brain ventricles in two scans taken a few weeks apart to see if they got bigger. The problem was, I already had hydrocephalus when the first scan was taken, so there was no significant change. Before my first surgery, my surgeon had mentioned the possibility of placing an extra ventricular drain, EVD. This would remove extra CSF from my brain ventricles. Evidently, at that point it was not apparent that I needed this, so he didn't put one in. But now, with the CSF leak, he decided it would be wise to do with the second surgery. An EVD is a temporary solution that they use while you are in the hospital to measure your CSF output and gauge your need for a permanent shunt and the settings that they would use for one. While you have it in place, you have to be in the ICU. When the surgeon first told us about the possibility of an EVD I teased my husband that if I was going to have tubes coming out of my head he would need to paint me blue so I could be like an andorian. For those of you not well versed in Star trek, that is one of the alien species that have two antenna coming out of the top of their head. I think it was my way of coping with kind of a scary situation.

The next morning, the nurses changed at 7:00 AM, and I was briefly treated to the worst nurse of my entire hospital experience. He was inattentive and unhelpful. At 8:00 AM when I asked for more Tylenol, six hours after my last dose, he insisted that the chart notes be followed to the minute and that he would not give me any until after 10:00 AM. Of course, by that point, the pain was so bad that Tylenol wasn't going to get on top of it at all. But that's OK, because just as he was coming in with the 10:00 AM dose of Tylenol, an orderly showed up saying that I was late for my surgery and whisked me away to the PACU.

Here's the thing: sometimes life is just bizarre. You can't plan for it. You can't expect it. You just have to roll with it. None of us had any idea when we woke up that morning what the day would hold. But we know Who held the day. Far before I got in the shower, or I felt a damp spot in the back of my head, or I sheepishly asked my husband to take a look, God knew what was going on, and all of the crazy steps that would follow. And He walked every one of those steps with us. We were never alone. We were never uncared for. Even when things seemed bizarre and uncertain, we had what we needed. All too often during this season of my life I have encountered days like this where the unthinkable, the improbable happened one time after another. The only way to get through these days with my sanity intact, was to keep my eyes on the One who knows the end from the beginning.

The Whole Story:

Part One - The Call That Changes Your Life
Part Two - When "Wait and See" Wouldn't Sound so Bad
Part Three - Reflecting on My (Almost) Presurgery Week
Part Four - Living in the unknown
Part Five - Taking Opportunities as They're Given
Part Six - The Big Event
Part Seven - How Many of you are There?
Part Eight - Beginning the Journey of Recovery
Part Nine - The Unimaginable 
Part Ten - I guess that's better?
Part Eleven - A Day in the ICU
Part Twelve - Long Haul ICU
Part Thirteen - Hair Today, Gone Tomorrow
Part Fourteen - A Soft Discharge
Part Fifteen - The End of the Chapter