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| This is the dressing and where the lumbar drain enters my spine. You can also see a white (and red) safety valve just below my waist. |
Before I tell this story I want to catch-up anyone who hasn’t been reading along in this blog. At this point I had a lumbar drain in my back so that they could keep the pressure from building in my brain. They were draining off 10 mL of spinal fluid every hour, but this is dangerous. If something happens that too much fluid drains I could get sick, have migraines or die, if I lost too much. Also, as you read in the last post, infection is a very big concern when they keep a hole open in your spine, so I have been nervous ever since my surgery. My nightmare night-after-night had been that the nurse had left my drain open or it had come loose and I was dying!
Alright, so now with the story:
On Thursday evening my wife went for dinner with her sister and I was sitting in bed with my iPad and decided to check facebook, twitter, email, etc. Since I was having some trouble with diarrhea because of the antibiotics and the many laxatives they had me on (to combat the pain meds) I asked the nurse to put an absorbent pad back on my bed.
Now, if you are laughing at me a little you have to understand that, at this point, I have two sets of monitors hooked to me, sequentials on my legs, a very important tube connecting my lumbar drain in my back to that machine, and, often, an IV. Also, I’m a fall risk so I’m not supposed to move without someone helping me…and it sometimes takes a few minutes before anyone answers my call button (let alone how long it takes them to unhook me and get me to the bathroom). So having bathroom troubles isn’t an easy thing. It was very likely that I was going to leave a pretty big mess.
Back to my original story: The nurse put a pad on my bed, but I’m tall and it wasn’t positioned quite right, so I remember sitting in bed and scooting about (the nurse supervised) and I pulled the pad up under me. I worry that I might have unintentionally and unknowingly pulled something loose at that point, but we’ll never know. The nurse left and would come back later with my meds. I remained in the same position checking facebook on my iPad. When the nurse came back with meds about 30 or 45 minutes later I was having a queasy stomach and felt a migraine coming on. It should have hit me then that something was amiss. I told my nurse that I had an unset stomach and a migraine coming on. My nurse left and later, I’m not sure how much later it was, (I was having a major migraine by then) I felt something wet behind me. I put down my hand into a bed full of spinal fluid. It still took a moment for me to realize what was happening. I looked down to see what had spilled and couldn’t find the tube for my lumbar drain. Once it hit me, I was utterly terrified by what I was experiencing.
I pressed the call button immediately and tried to turn up on my side the way I had lay the other night when he re-did my dressing. Luckily the unit secretary answered the call right away and I called out that my spinal fluid was leaking out. I don’t know how she made sense of what I was saying, nor do I know how my nurse, Sean, made it to my bedside so quickly, but it was his quick thinking and steady hands that were able to pull the bandage away and find a tube to clamp off.
The nurse came back and told me he had paged the surgeon and he waited, pacing (and freaking out a little), with me in the fetal position and blanket over my head (trying to keep dark because of the migraine I was suffering). There were many nurses and others (interns?) in my room by now. I could reach my phone so I called carrie to tell her that she should come right away. I lay there and finally worked up the courage to ask the question I needed so badly to ask, “If I lost too much spinal fluid to survive, would we know it already or will we find out later?” One of the nurses replied, “I don’t know, we need to wait for the doctor. The surgeon arrived and explained that to help alleviate my migraine I need only to be laid out flat. The migraine subsided a bit as he raised the bed to table height. I told him I’d just had work done on the dressing the night before and he responded that he was the one who had done it. I told him, “Then, doctor, you have seen my ass two times more than I would like!” (Which did illicit laughter from him and the rest of the room)
He said that I am young and healthy and since I was still alive and conscious I would likely be alright. He later told Carrie that if I were elderly or obese or otherwise in poor health I would have likely died from loosing so much spinal fluid.
So, as be began to work on me, my wife arrives on the floor. I know this because I could hear her voice raising as she tried to get past the nurses. To Carrie’s chagrin the room was already sterilized and they would not let her in.
I laughed a little and told the surgeon to watch out. I explained that Carrie, if she feels I was in danger and he was keeping her away from me…I explained that she would probably let him have it. After a moment of silence I said, “but don’t worry, I’ll remind her that you and this nurse just saved the life of the man she loves.”
As Carrie continued to try to get in, the surgeon leans over and says to me, “That is true love. We have a hospital full of people who don’t have visitors, but you have someone fighting to be with you and to advocate for you.”
Had I been older or in worse shape, had I not realized the fluid was leaking out, had my nurse not been so quick…had the night not gone just as it did, I might not have survived that night. The recurring nightmare I’d been having all week came true, but because of an excellent nurse and just a short time later an excellent surgeon, I was put back together and my wife and I were able to see one another again. By the time the surgeon finished it was well after 1:00am. Carrie, again, stayed the night. I mean, it really wasn’t a choice, at that point. I don’t think anything could have moved Carrie out of that room that night.
Oh Scott. I had no idea all this is going on. Please know that I care and will be keeping you all, Drs. nurses, Carrie, family in my prayers. You go Carrie. He is worth it!
Love you Scott and be well.
Inspiring.
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