Thursday Night: Near-Death

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.
Resurrection & New Life: Is This Easter?
Image found at:  http://www.canadianlutheran.ca/a-well-spent-lent-2/






Today I invite my wife to be my guest blogger here on “virtues.”  Rev. Carrie Carnes is the pastor at Chenoa United Methodist Church which is just 25 minutes North of Bloomington-Normal, IL.  She will graduate from Garrett-Evangelical Theological Seminary next month, although she finished her classes last summer and has been serving at Chenoa as a full-time pastor since.






This isn’t what Easter’s supposed to be like, is it?


Scripture:  Mark 16:1-8


Throughout Lent, we sang “Lord Who Throughout These Forty Days”.  It’s a great hymn about Jesus’ time in the desert. The hymn reminds us that when we are in barren places- Christ is with us. When we find ourselves in those wilderness places we often feel alone and it can be difficult to see God walking with us. During Lent we inspect pain, suffering and sin with the assurance that God is with us- and with the knowledge that Lent ends with Easter.
Scott and I had a rough Lent; especially the first part. We were in the wilderness. Scott had brain surgery in February. As we returned from the hospital and subsequent stay at the Berry Family Convalescent Home and Pet Boarding Center (what we call may parents’ house). I was ready to go. I wanted to dive right back in to everything. But then Scott got the flu and I had to find someone to fill in for me at the last second that first Sunday. We had to make unplanned trips back to St. Louis. Scott’s recovery plateaued. We were in the wilderness. I wanted so badly for things to be normal again but nothing seemed to be going right. Towards the end of Lent things looked up a little. I felt like I got my groove back. I felt refreshed and could feel the Spirit’s presence with me more and more. Holy Week was wonderful, and Easter Sunday brought such joy. I felt like I had lived liturgical cycle and was filled with new life. Plants and plans were budding. 
And then it happened. Scott started in with intense migraines again. We wound up back in the hospital Saturday. We were transferred back to St. Louis Sunday and informed that Scott needs yet another surgery. I feel like we went back to the beginning. Lent’s over. We’re not supposed to be in wilderness anymore! Lent is 40 days, so I found myself wondering: did we take a wrong turn? Have we gotten lost? Will we become like the Hebrews stuck in this wilderness 40 years?
After the news sunk in, and after a little sleep I began to feel a little more hope. I’ll admit however, that I’m not quiet ready to sing “Alleluias!“ just yet. Though in churches we rightfully celebrate the resurrection with great joy; if we take time to read Mark’s account of the resurrection noticeably absent is the joyous celebration. Mark instead describes the morning with great fear, showing us the darker side of the resurrection.The women have just witnessed their friend and leader crucified. All the other disciples have fled in fear and while the women have remained, it seems safe to assume that these women have remained not without fear- but despite their fear.  The women nervously venture up the hill to the tomb. They discover the tomb is empty and are greeted by this young man in the white clothes of a martyr. He tells them “Don’t be alarmed”- now he wouldn’t have had to say this if they weren’t alarmed would he? He instructs the women where to go to find Jesus, “…he is going ahead of you into Galilee”. In saying this he is sending the women back to the very place where the Gospel began- where he first called the disciples. I wonder if the women also thought, “So its like we’ll be starting back at square one.”  Then the Gospel ends with its final two chilling sentences, “Overcome with terror and dread, they fled from the tomb. They said nothing to anyone, because they were afraid.”
When I read that Easter passage, it’s hard for me to imagine lilies, Alleluias and the bright festivities. This passage is filled with challenge and dread. The women are not venturing out into the Lenten wilderness, but there is a terrifying journey that lays ahead of them. 
During Easter we celebrate the resurrection. The past couple of days have reminded me that Easter is not just about the thrill of an empty tomb and new dresses. While God is creating new life all around us, that life isn’t easy. It’s still filled with pain and challenges, disappointments and starting over. And some days that sucks. But just as we are assured that Christ is with us in our Lenten wilderness moments so too does that angel at the tomb assure us that the risen Christ has gone ahead of us. When we are faced with frightening new starts and begin tedious new journeys we can hear again the angel’s words, “You will see him there”.
The Roommate.

Last night was not so easy. My roommate is in his 70’s or early 80’s and turned his tv on by evening. Oh my goodness it was blasting. I had already asked to move rooms because of a noisy roommate and was determined not to have to again. I asked for earplugs and arranged for my medicine to be well-timed. My roommate turned off the tv at bedtime and I….couldn’t sleep. I had earplugs. I had drugs. I had an adjustable bed with plenty of pillows and blankets, but I didn’t have sleep. Oh, I’ve slept for a few hours here and there, but it wasn’t deep restful sleep. Then this morning my roommate called for help as he had messed himself. They did the neurological tests where they ask his name, birthdate, where he is at, etc. it was a new person asking him and they didn’t seem concerned, but I’d been listening all day and his answers were a lot slower and he covered with humor, but he had to think for a long time on somethings. In fact, he got the year and days backwards on his birthdate before quickly correcting himself.

I don’t know if it was the right thing to do, but I went against doctors orders and got up and walked on my own to the nurses station so I could tell them. They came and spent time with him and I pray all is well, but I think they are going to keep a closer eye on him. I think that it is important to have an advocate with you in the hospital.

Day 3:  Monday at BJC
Scott hard-at-work blogging from his hospital room. (That’s some great hair, Scotty) -Carrie





You are probably getting tired of my hot air, but I have advice. I’m writing this, so if you’re tired of reading it, stop. For the rest of you, press on because it only gets more monotonous! Are you excited?

Monday I was finally able to have some breakfast and it stayed down. Whoo-hoo! The doctors finally came around and explained surgery and my MRI results and by mid-morning I had this new roommate who is a really nice fellow.


If you’ll remember my meals kept getting pushed back because they didn’t yet know how soon the surgery needed to be. The real question at hand was whether there was an infection and the MRI came back clean. More good news. The down side to this, of course, was that after all the waiting I was in for more waiting. Well, that’s okay. I’m not in a hurry to be under the knife again. I had breakfast and, even tho it was cold, gross and greasy: It was one of the best meals I had ever had. Oh boy was I hungry!


When it came time for lunch, though, (yes this is about to take a sad, unfortunate turn) they said I couldn’t eat for awhile again. They were going to do a procedure to reduce the pressure and swelling by using syringes to pull some of the fluid (and blood) out of my head. It wasn’t so bad. At first Carrie told me it was a spinal tap and that sounded excruciating, but it wasn’t a spinal tap, they just had to get under the skin, muscle and scar-tissue to pull it out. Now, don’t get my wrong, it hurt. I think I nearly squeezed my wife’s hand off, but it was bearable and I finally had some relief once I recovered from the procedure. They did the procedure right in my room and numbed the skin with lanocaine (sp?)


The rest of the day was super-exciting. I laid in bed all day. I had fun little moments like when dinner came, but it was a very long day. On Sunday I slept nearly the whole time, but by monday I found myself not sleeping all that much. You may know something about that yourself, I don’t know. But isn’t it increasingly tough to really rest in a hospital once the newness wears off? Well, it is for me. I think my buttocks begins to get sore from sitting and my nerves get worn by the staff, my family, and other patients and I have a harder-and-harder time truly resting!


That’s really all that is fit to print for the moment. After my minor procedure I was pretty well out of it for the next hour or so. It really left me tired and sore, but once I began to sit up I realized that I felt tremendously better.

Day 1 – The ER in Pontiac

Gosh, it’s weird and confusing to be here all over again. Here I sit at Barnes Jewish waiting for surgery. I’ve been through this once so you’d think I’d know what’s happening, but i don’t. It’s been a strange whirlwind sort of weekend and we are just getting to see the full picture.

These last couple of weeks have been harder on me than the initial recovery and last week it got real bad by wednesday when I woke up with terrible pain and headaches which caused me to throw up and then I continued throwing up all morning from about 4 or 5 am until noon and then I finally found a comfortable position and fell off to sleep and slept the rest of the afternoon. The next couple of days were rough, but no more throwing up until Saturday. Saturday was nearly exactly like Wednesday. I woke up earlier than usual and then continually vomitted, but it never stopped. We called the neurosurgeon, just as we did on Wednesday and they weren’t terribly concerned (they didn’t think it was surgical or related to my surgery). But the neurosurgeons said that we should go to our local ER if the pain persisted.

Finally around 3 pm or so we realized that I was getting no relief. The problem, though, for me, was that I couldn’t imagine having to go by car to the hospital. The light and motion seemed like they would just make everything so much worse that I delayed a fair bit before agreeing to go. Well, reason kicked in and my wife helped me to the car and drove me over to St. James OSF Hospital in Pontiac. We go to the hospital around 4 or 4:30 pm.

They got me right into an ER room and I we asked them to make it dark and quiet.  They took care of it immediately and got me on some anti-nausea meds and morphine. Gretchen stopped by cause she was already out and about and sat with me while Carrie went home to pick up my MRI scans and reports from February and March (which we had left at home). The Pontiac hospital did a CT Scan and we waited until 2 am or so to find out that they believed there was bleeding in my brain from the surgery.

It was a long day, but finding out what was going on and finding out that I was getting to transferred was a load off. Sometimes just having a plan makes everything a little better!
I will share more a little later and bring you all up-to-date. For right now, I’m going to relax a little and wait for Carrie to get back from the waiting room. A visitor just came and she took them away from the room so that I could rest.

Thank you, all, for your on-going prayers and concern. We do appreciate your caring support very much!

Nurse Bob.

If you ask my mother about my care in the hospital her eyes still roll a little and she’ll probably say, “I didn’t like that ICU Nurse, Bob.”  If you know my mother, you’ll know that she is a very agreeable woman and you must assume that something terrible happened in order for her to not like Bob.

Well, what happened is that she and the rest of my family (with the exception of my wife) got kicked out of my ICU room.  Her ‘little boy’ was in ICU and she got kicked out by a nurse.  That was all my mother needed to instantly not like Bob.  You might ask, “What happened for them to get kicked out?!?”  “Were there too many people in the room?” No, they just came in two at a time.  “Did your father act inappropriately?”  Surprisingly, no.  “Was your mother too emotional?” nope.   …well, you get the point.  They did nothing wrong.  It was me.  I got them kicked out.  It’s amazing that even in a drugged up, post-op stupor I could cause my family trouble.
You see, I started running the room.  My type A personality kicked in and I was instructing everyone about what to do.  “Fluff my pillow,” “no, move that pillow,” “move to this side,” “get me ice chips.”  I could barely speak, but I could still direct, apparently!  The way my wife describes it, I must have been the worst patient ever!  EVER.  Nurse Bob was actually awesome.  He went above and beyond and looked at my needs.  He knew that I needed to rest and realized that I simply wouldn’t until he cleared out my family, so he made sure it happened.
I was thinking that some of us tend to do this, not just with a hospital room, but people like me tend to do this with our lives.  People like me (you know who you are, don’t duck away from that computer screen) think that we can control things, but sometimes trying to control the things around us…sometimes trying to bring order, actually gets in the way of our own happiness and gets in the way of what we really need.
This probably sounds a little cliché, but I think God is, in this way, like Bob.  God has a way of looking at us from a different angle and trying to provide what we need, so that we can be healed or fulfilled. You getting me?
We can get so busy trying to get what we want, that we totally miss what we need.  I think many people put careers, money and prominence before the things that really matter.  I remember the stress of picking a major as I went off to college.  I was trying to manage my life and trying to prepare for: being married, having 1 1/2 kids, a dog, and a white picket fence.  Oh, and I can’t forget that I wanted to be very well paid.  What I didn’t realize is that I was making a mess out of my life those first couple years of college.  I needed someone to clear the room and help me relax so that destiny would find me.
Finally the room got cleared and I realized that I was being called to ministry.  It meant sacrifice, it meant letting go of some control (I’m still learning that part), but it also meant fulfillment and happiness.
Take a look at your own life.  Are you trying to control it or are you living it?  Are you focused on what you want, or will you let go and be called by God to what you need?