Wednesday:  Exposed!
So, Wednesday evening I was introduced to my new nurses and was settling into my space (my wife was actually the one doing the ‘settling,’ I was doing the ordering).  Finally my wife left to go to her parent’s house and get some sleep and I laid back and fell off to sleep.  I woke up needing the restroom, so I sat up on the edge of the bed and got ahold of my urinal.  Something didn’t feel right though, when I pulled up out of bed.  I put my hand behind me to feel the lumbar drain and I felt a string (It was later confirmed that this was the smaller tube from the lumbar drain that should have been under the plastic dressing).  I called for the nurse. 
Now, before I explain what happened, I have to tell you that, every since the surgery I had been paranoid about that lumbar drain.  Every 5 minutes I was asking the nurse to check that the drains were turned off or that the dressing was alright and not leaking.  I think most people can understand how I would be a little paranoid about this thing I didn’t expect, didn’t want, and this thing that can kill you…
So, back to the story!  I called the nurse and said the lumbar drain dressing didn’t feel right.  She said, “I’ve found someone more OCD than me, I think!”  I said, “Yes, but will you please look at it?”  Of course she was glad to look at it  and came around behind me with her little light…  She ended up leaning in really closely to the dressing, because I could nearly feel her breath on my back and from back behind me she quietly said, “I need you to stay very still and I’m going to call the on-call surgeon.”  I asked if everything was okay and she said that she didn’t know, but she didn’t think I was in any danger if I just stay still.  She hustled out of the room and I could reach my phone so I called Carrie and told her something was up.  She didn’t arrive until everything was finished.

It was a very simple procedure.  The surgeon did a great job simply re-dressing and re-sterilized everything and since we became aware, right away, that it was exposed I was never in any serious or imminent danger.  Once everything was sterile and under a plastic dressing again, I was ready to go back to sleep.

Carrie stayed at the hospital the rest of the night, since it was after 2:00 a.m. by then!

Day 2 – Getting to St. Louis.
image found at:

Hmmm. So where did I leave off? Ah, I told you all about getting sick on Saturday and getting to the Pontiac Hospital. I was feeling a little stupid, you know, expecting the doctors to say, again: “This is all normal, take some tylenol and go home.” My wife later said it’s like going to the mechanic and having the rattle stop once the mechanic is there to listen. Well, as most of you now know, it wasn’t business as usual. The radiologist told us it looked like bleeding in my brain from the original surgery and they wanted to transfer us to St. Joseph’s in bloomington. Luckily my wife was not satisfied about the transfer. For me, I would have done anything I was told I was so goofy from the morphine, but my wife was on top of things. She was confused why they would transfer me to bloomington and not to the doctors I knew already and the facility where I’d already had brain surgery. Well, for those of you who have not yet met my wife, she is never afraid to speak her mind. She told the doctor that we would just wait until he had contacted the surgeon’s office in St. Louis. I’m sure my wife felt elation when he walked back into the room looking a little defeated and said, “the doctors want you transferred back to Barnes.”

At first we were told the transfer would be within the next hour or so…so Carried stayed by my bed from 2-4am. Finally they told us that they were out of ambulances and drivers and that it would be 7am, so Carrie went home and got some sleep…at least I thought she did.

She was so worried about Sunday morning going well, that she secretly went to Chenoa an
 worked on Sunday morning stuff and prepared for worship for several more hours, since I had kept her from doing any work during most of this past week. She is a loyal and conscientious worker.

The ambulance got to the hospital around 7:45 and we were piled in and headed to St. Louis by 8am. It was really a pretty comfortable ride (morphine and anti-nausea meds help with that, though). Most importantly, the paramedic and driver were excellent and really went above-and-beyond to make us comfortable, give us internet access (yes, amazing, right?) and to provide excellent medical care.

Since we’ve been at Barnes-Jewish (we got here around 11am or so Sunday morning) it has basically been a waiting game. I mean, this situation was unscripted and this hospital visit was unplanned so they had to slip me in front of other people for the MRI and bounce me around rooms a bit before things were satisfactory.

We saw a neuro-surgeon resident who was on-call this weekend who was exceptionally helpful, very thorough, and really paid attention to my situation. Oh, and he really seemed very knowledgeable. He came by the room in the early-to-mid afternoon and talked to us about the CT scan that was taken in Pontiac. He wasn’t convinced there was any new bleeding, but certainly there was spinal fluid leaking and…the best way to describe it would be a ‘pressure problem.’ If spinal fluid is leaking out from the skull, there isn’t enough in the skull, so my headaches and my pain was from the pressure being ‘out of whack.’
He also helped me to understand my headaches. I explained my different head pain and headaches and I told them that sometimes it shot from the back of my head to the front. He told us that the C2 (not sure that’s right) nerves or nerve bundle (or something) arch up from where my surgery was done to the front of my head and that was causing some of the headaches I had been experiencing. Gosh, it was just great to know that they believed my pain and that I wasn’t crazy. Okay, so this isn’t definitive proof of my craziness. My brand of crazy comes from somewhere else, though 🙂

The MRI wasn’t able to happen until 6:30 pm or so on Sunday night. They wouldn’t knock me out and it took about 45 minutes. I’ve never had trouble with MRIs before, but I thought about that bump on my head and the nausea I felt and I told them I didn’t think I could do it without being knocked out. They were moving me onto the MRI when I looked up with big sad eyes and said, “Oh, so I guess the doctor didn’t approve for me to get knocked out for this. The Radiologist’s only response was a slow, sad head shake.

Well, it was long and painful, but not intolerable. They didn’t even have to re-do any of it. I rocked out that MRI…yeah. And then we waited for results.

I hadn’t kept any food or water down since Friday evening at dinner and this was Sunday night, so I was hungry. No, I was famished. I’m a Carnes and we should come with a label, “Dangerous When Hungry.” Well, they didn’t want me to eat until they knew for sure that I wouldn’t need surgery until Monday. They said it was unlikely, but if there was an infection I might need immediate surgery and they didn’t want me to eat in that case.

I’m a reasonable guy (when I’m not hungry) and I understood that it would be a while before we got MRI results, but it took several hours and then the nurse came in at 10 pm (or so) and said that we probably wouldn’t hear any more until Monday morning. You should have seen the look of despair in my eyes. I explained how I had not eaten in days and how I’d been promised food before bed, so long as there was no emergency surgery. The nurse took pity on me and, despite orders, gave me a few ice chips.
Oh, that ice and water were exquisite! I mean, that water tasted better than the best wine. OooOOohhhhh, soooo good!

Well, that gets me to Sunday night and you nearing know as much as we do so far.