Sunday, April 29, 2012

Scars



In the photo above you can see my incision that it is now beginning to heal. The trauma of getting that scar, twice, now, was extreme and, as you have read in this blog, I have many memories, both traumatic and good, from my time in recovery (both at the hospital and, now, at the Berry's home). It's crazy how this scar can be fading so quickly when the experience still feels so fresh.

I feel the scar and the people around me see it. It is a constant reminder of these complicated memories. Yet as the physical wound heals, fewer people now say, "oh my, what happened," or, "how did u get that scar?". The physical scar is less noticeable and far less commented on, yet my wife and I (& other family members) will always carry the emotional scars. My wife will always see the scar, whether actually visible or not, when she sees the back of my head.  For my part, I will always feel the scar.  Fortunately, we have a God who understands the memory that lives in scars.

We talk about Christ being on the cross, but that experience came with significant scars. Hanging on the cross, from the outside, seems like a wholly terrible experience, but that terrible moment was proceeded by a life that brought many blessings. The scars of Christ were not just a negative memory, but a reminder of the loving acts committed by Christ, as well. The scars of Christ are reminders of the good that came out of a bad situation.

I think that all of us are confronted by scars sometimes. We all find troubles that leave marks on us whether physical marks or emotional. It is up to us whether we will dwell on the passing negative experience or whether we will find good in the midst of angst and trouble. Christ endured the bad that we would all know the good (His Love). When we experience trouble we must look to Christ, so that through Christ's wounds, we can experience joy even in the midst of our own pain, our own wounds, our own scars.



Friday, April 27, 2012

Immigration and Private Detention Centers



I will never forget standing in Nogales, Mexico watching Wackenhut busses. Tired, hurting, hungry men women and children would make their way- sometimes needing the assistance of a friend, down off the bus, across a bridge, international boarder, and finally to the No More Deaths Aid station where I worked. I would brace myself so that I would be ready (but how could anyone ever be ready), to offer them soup, water, first aide, to hear their stories, and document the abuses that they had survived.
The migrants would often arrive at our aid station in terrible shape. We met people with raging infections, in serious dehydration, with broken bones, in diabetic shock and having heart attacks; none of whom had received medical attention while in custody. They would tell us of the days they spent in the desert, and then even more days in custody often with no food or water. Moving from my sheltered suburban upbringing to the border I was not prepared to hear these stories of people who had sometimes spent 3 days in custody and yet received no food, water or medical attention. Men bore the bruises of physical force abuse, women told of sexual harassment and assault, children cried as they looked for their families from which they were separated. Sometimes this happened in the desert, at the hands of smugglers or the elements. Often, this happened in custody. 

We listened. We bandaged. We documented all of this, but that documentation often seemed pointless. When not at the border, I would spend days logging these handwritten documentation forms into our data base. There were thousands- an unending avalanche of abuse. We would try to follow up, but who was going to bring complaints? The migrants who survived the abuse had too much at stake and were too disenfranchised. When we did file complaints it was often difficult to know against whom they should be filled as the migrants were disoriented. After days in the desert, when taken into custody they entered a chain of confusion. Sometimes they would first be stopped by vigilantes, arrested by Border Patrol and handed over to Wackenhut. They could be moved through multiple detention centers, kept up all night. At whose hands then did this abuse occur and where? We didn’t know. What did quickly become evident was that with abuse as pervasive as we saw, there was not one or two individuals to blame. It was clear that what we were facing was a culture in which such behavior was commonplace and accepted. 



When we privatize prisons, detention centers and transport; and when we further and further convolute the chain of custody we also make accountability more and more difficult. The year I spent on the border working with No More Deaths as a Young Adult Volunteer with the Presbyterian Church (USA) taught me many things. I learned about myself, about the border and about God. It was also that year on the border that shaped my understanding of the nature of evil more than anything in my life ever has, for it was that year that I so starkly looked into the face of evil.
I had grown up believing that we were called to do good and avoid evil. These choices I thought were simple, and clear cut. I was wrong. Even in the process of doing good we participate in evil. The work I was doing with No More Deaths was good work. We were living out Christ’s teachings in Matthew 25. We were however also trapped in a system of evil and exploitation. We were observers to the abuses that occurred in custody, we were used by the smugglers as we bandaged people only so they could cross again with the smugglers who circled the aid station like vultures. We were aware that we were caught up in this web of sinfulness and exploitation. We were also aware that we were called to be present in the midst of such evil. So we prayed, and we had discussions and we worked with God to discern the best ways to navigate that precarious call. And, we held each other accountable. 
The world is not an easy place. The border and our current immigration system are broken. That brokenness causes immense damage to creation, the Kingdom and thousands of God’s Children. We are called to fix that broken system, but that will take years if not decades. We can all disagree on what a fix to that system might look like. In the mean time, however, we can seek to minimize the pain that that broken system causes. One way to do that is to name the pain so that we may all be accountable to the ways we participate.
Through privatization, we incentivize participation in the broken system. We increase the number of people who profit from the victimization of increasingly vulnerable people. In so doing we feed and strengthen evil. We also decrease levels of accountability. The longer privatization of prisons, detention centers and transport continues the more ingrained the culture of abuse becomes. In 2006-07, when I was working in Tucson we saw the beginnings of this privatization and the worsening of abuses as time went on.
When Wackenhut began transporting migrants, we would be allowed to board the busses and provide food, water and first aide. As time went on, cooperation decreased. Secrecy increased, we were no longer allowed on buses. Officers refused to speak to us and would not accept our aid kits. Treatment worsened. 
When I sit at home in Pontiac, IL this issue of the privatization of detention centers seems small and remote. It doesn’t seem as though this affects me, or could even effect that many people. But we try not to see the numbers. During my year in Tucson, our Nogales Aide Station served an average of 1000 people a day all fresh off the buses. That’s in one small border town. This issue affects thousands of people every day. This issue causes increased suffering and pain to thousands of God’s Children. 

But the migrants aren’t the only ones affected. I pray for them, I get the most upset because their suffering is the clearest to me. We also need to pray for those private prison guards. As they are assimilated into this culture of abuse and dehumanization they too are effected. They too are dehumanized and victimized for the perpetuation of such treatment strips away at them as well. 

That’s the thing about evil. We act in sinful ways, believing that we are in control. Soon, the monster we have created is chasing us perpetually across the globe and we find that we know longer can control the monster we have created. It now controls us instead. 



Thursday, April 26, 2012

An Obese American Church


The United Methodist Church has become, like seemingly everything else, an overweight, super-sized monstrosity. It has become both victim and perpetrator of the falsehood that bigger-is-better. The bureaucracy and, even, the local churches have lost connection with a quickly changing America because we are fat and living in the past. Now, I know I will receive criticism for not calling it a 'global' church, but the United Methodist agencies physically have their offices in the United States and General Conference, in 2008 and since, has chosen to not take it's global nature seriously, so how can I? Also, I am located in the United Staes so I can only speak for the portion of the Church I see in action. I cannot speak for the European, African, or Asian Churches, for instance. So I will speak of the US UMC.

In most 'regions' of the US United Methodist Church, the largest amount of waste and disconnect in the church is our historical Annual Conference Systems, offices, and staffs, but that is a topic for another day. Today I want to address the challenges facing General Conference which is raging right this moment. For those of you who don't know, General Conference, in short, is a global legislative conference of the United Methodist Church which sets polity and direction of the church and it's many boards and agencies.

The most controversial proposals before that body this week (and next) are concerned with restructuring and 'streamlining' the church. The words I like to use is that the United Methodist Church must become more nimble if it is to begin responding to a new culture,a new way of life in the World, and being a global church, which is a necessity! Yet, groups, especially agency staff (surprise) and many of the young people of general conference seem to be concerned that there will not be fair representation if we shrink the structure. (I'm sure there are others, again, I can only attest to the tweets, blogs and voices I have seen and heard...)

At first, when a very small board was proposed, that might have been a serious concern, but now that the authors of the "Call To Action" have accepted the need for larger board(s), this is no longer a real concern, if you ask me. The concern is more likely for people who have been serving as board members, like me, or staff members, who fear that there will not be room for them in the new system. We have to put aside these worries.

I chose not to put my name in for a general board or agency during this next quadrennium. I have plenty to do trying to make my local church more vital. I suggest that others, including General Conference delegates do the same. We all need to show a willingness to 'give up our own seat' before we can talk authentically about the needs of the church and the good of this church that we all love.

And perhaps it is time to let go of a jurisdictional pool system that has given such limited leadership (and helped certain people hold on to positions for so long), but, again, that is another topic for another blog. Hey, Jurisdictional and Annual Conferences are coming. I have to save some topics for those weeks!















*top image found at:  image found at: http://www.efr.org/workplace-classic/eap/providers



Wednesday, April 25, 2012

Health Checks


Me in the hospital in February 2012 after first neurosurgery.


I suppose everyone has a different experience of the hospital than I do / did, but for me a shift happens at some point during hospitalization. When I was admitted this last time, I was miserable. After surgery, I was hurting really bad. During my first days in a hospital I usually feel as though I need to be there. With this last ER visit and hospitalization, I could only find relief at the hospital and couldn't imagine going home. As time goes by, though, I begin to feel better and there is finally time when I realize I can go home. A shift happens where my need for the hospital is outweighed by a need to go home.


This time I had so many 'incidents' that made me feel bad (like the spinal fluid leaking or migraines) that I didn't realize how much better I was getting overall! On Saturday the doctor came in and said they were ready to discharge me when I was ready to go. I was shocked. At first I said, "no way." I mean, I had just had a migraine that morning, but, then, I realized that my pain meds were being reduced, anyway, and there is really very little they can do for the migraines anyway. There was nothing I was getting at the hospital that I couldn't do at home. It was an odd moment for me and I looked up at the doctor and said, "You know, it seems like it is time to go home after all." I only wanted to clarify our at home plan for remaining comfortable and healthy.


At my in-law's home recovering after my first neurosurgery in Feb. 2012


Sometimes it is difficult to recognize our place and what is healthy for us. Whether it is our marriage, a house, a church or organization, or group of friends we can sometimes forget to consider our own health and happiness. I think, especially in marriage, we get comfortable and stop talking to our spouses about healthiness in our relationship(s). Just like in my hospital stay where I constantly evaluated my health and situation with my wife, the nurses & doctors, and with myself; our marriages and other relationships constantly need to have healthy communication and evaluation otherwise we lose track of our health. We wake up one day and realize that we no longer have a healthy reason to stay.


To stay healthy, we can't just talk about the 'nice' things...In the hospital it isn't easy, at first, to talk about bowel movements or have someone you don't know help you with a shower; but these difficult conversations are just as important as the easy ones. In marriage, especially, it is easy to just say the "I Love You's" and forget to talk about the difficult things. Carrie and I try to talk about the difficult things as much as the easy stuff. It sometimes means that we fight. It sometimes means that we get angry or hurt, but, in the end, it always means that we grow in our relationship, know one another more, and have a more solid foundation for the future.


We have to keep an eye on our relationships and we have to constantly evaluate where we are in those relationships and their healthiness.

Tuesday, April 24, 2012

Scott's Shout-Out!



Scott shares a message with family and friends. Click here or 
the "youtube" icon in the bottom right of video to
view fullscreen or see the rest of Scott's videos.

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.

Monday, April 23, 2012

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!




The Surgery Explained!


I try to carefully explain Scott's second surgery to fix his "pseudomengingocele."



Wednesday Misery

This is actually from Monday before when Dr. Beaumont
pulled that fluid out of my head with syringes. (before my second surgery)

After the surgery on Tuesday I was in the ICU.  Things were progressing pretty well, there, so they moved me on Wednesday (morning?) to the otherside of the 10th floor which is a “step-down” unit.  I’m still hooked up to the telemetry monitor (wireless), but also a room monitor and they still keep a closer eye on us there, but its a shared room with doors, like the rest of the hospital.
When I got to the new room, I had a seemingly very nice and quiet roommate.  Also, I was feeling pretty good...but then the migraines started.  Oh Lord, the migraines!  Here I was in a room with machines beeping and squawking every 5 minutes (one of my monitors was clearly not working right).  In a room with doctors, nurses, and techs barging in and out, not just to care for me, but also for my roommate.  It was not really anyone’s fault, but I was hurting, not just because of the brutal migraines that had gripped me, but because of the cacophony noise, light and motion that seemed unending.
They told us they could get us a private room at first, so there was this hope keeping me sane and then someone else got put in that room and they said I was out-of-luck.
Up until now had endured many painful procedures and had gone through quite a lot, I think most of you can agree, but these migraines were more than I could handle and they had no plan to help me find comfort or even improvement.  Finally I just lost it.  Looking back I feel so bad for the nurses because they were doing all they could do, but  I was finally able to talk to the right people and next thing you know I was in a private room with the lights off!
Not sure what made it happen, probably a combination of everything we were doing:
  • the nurses and I working together on figuring out a new schedule for pain meds
  • the suggestion of Toradol by my Nurse Practitioner
  • and we can’t downplay the role of that new quiet single room
...but I found relief!
Once I was in that single room (and that only happened after I had a little... no...  A  BIG meltdown), I was almost embarrassed that I started feeling so much better.  But my wife reminds me that if I hadn’t gotten a quiet space I might never have started feeling better and I deserved a space that helped me to heal, not a space that made me hurt worse!  (I think she’s right).
Wednesday was terrible.  We seemed to not be managing any of the pain and I never had pain of less than a 9 (maybe an 8 at the least) all day.  Most of that day my pain was excruciating.  I make a big deal out of this only because that night was so amazing.
Once we found the right drug schedule; once we found a new drug to start; once I found a place where we could manage noise and light and cut down the traffic...the pain began to just disappear.  As bad as I had felt all day, within an hour of being in that quiet  room I was a different person.  I pulled my head out from under the blanket.  I began to talk and began, eventually, to smile again.  Wednesday evening I was suddenly able to function a little bit again.  I owe it all to the nurses and administration at Barnes-Jewish for working so diligently to find me a space even though they were out of private rooms, and even though I was yelling and crying at them.  I think I would still be suffering in the hospital (instead of recuperating at home) had they not been able to work that miracle!



Recap: The Story So Far...

the lumbar drain in Scott's back.

I’m exhausted, but I’m feeling pretty well right now, tonight.  I thought I would blog a bit and, as I looked back, I realized that I’ve never actually told “the story” of what’s been happening, really, since getting to St. Louis.

So, first recap of my last surgery:
I had a benign (didn’t know that for sure till it came out) tumor in my cerebellum.  They came in from my neck; cut my neck muscles away and held them away from my body; and cut out a piece of my skull.  They next opened up the dura (sp?) which is the membrane around the brain and then used probes to go into my cerebellum and resect the tumor which was in the left hemisphere of the cerebellum kind of near to my spine.  Then they closed the dura and skull (which I don’t remember how they explained it, except we now know they use titanium screws to put the skull back and once everything was put back into place they used staples to close the incision which was several inches up the back of my neck.
Now, I recovered pretty quickly for the first few weeks and then had setbacks with a couple bouts with -what we thought was- flu.  Even after the flu, I felt as though I had progressed, but starting about two weeks [before I ended up back in the hospital] I began having more bad days than good.  We’d always had bad days and good days, so, until we had the benefit of hindsight, we didn’t realize things were actually getting worse.
Well, they were.  During the week before I went into the ER I had only bad days and ended up nauseous often.  Wednesday before I went the ER I woke up throwing up at 5 am and didn’t stop until noon, but by noon I finally got relief and slept the rest of the day.  Thursday and Friday were miserable and I still had migraines, but I wasn’t throwing up and we had called the doctors, none of which thought this was necessarily unusual after brain surgery...
But on Saturday I woke up vomiting in the early morning hours, had the worst migraines I’d ever had and it wouldn’t stop and probably wouldn’t have.  We called my surgeons around 11 or maybe 1 and they said if it persisted to go to the ER, so around 4pm we headed to St. James OSF Emergency Room.  They were very good with us.  You can read that account in DAY 1 - The ER In Pontiac
Once we got to St. Louis and were working with neurosurgeons and not just an ER doc, we were still afraid that they would look at us and say, “Um, you just had brain surgery, there’s nothing abnormal, go home and take some tylenol.”  Are you seeing a pattern?  And by the way I hadn’t been able to keep water down since Friday night and had eaten nothing since then either.    They looked at the CT’s from Pontiac and the on-call Neurosurgeon asked us some questions and let us tell the story of how we got there (and listened to our questions, anxieties and fears) and then explained it probably was not a fresh brain bleed like Pontiac thought it was, but there was definitely some fluid and if fluid was flowing in and out of dura/skull around the surgical site, there probably was some bleeding as a by-product of this activity.  The migraines, then, were being caused (and then getting better briefly) when that spinal fluid would leak out of the brain membrane and skull out under my skin.  The brain, then, didn’t have enough spinal fluid pressure and I’d have migraine and then my brain would produce spinal fluid to compensate, but with more pressure that would all leak out and form large pockets of fluid outside the brain and it would happen all over.  He also explained where my other headaches (which I had described) were coming from (with detail) and explained that they wanted to do a surgery to correct the structure of the brain where they had done the surgery in order to make sure the spinal fluid was draining from the gland that makes it, down through the brain as it is supposed to.  He used the metaphor of a kitchen sink.  If you set it running at a certain speed and have the drain open it will just continue to drain properly, never emptying and never overflowing, but if you stop it up, or somehow open the drain wider, it no longer drains as we want it.  We really thought Dr. Beaumont was just great.  You can see him, later, shaving my head in this video:



So now, I hadn’t eaten since Friday and it was Monday, so that was really the first thing on my mind.  I finally got to eat something!  (On Sunday they wanted to wait until the MRI results were gone-over to make sure I didn’t need emergency surgery that night before they gave me food)  Now, on Monday morning I got to eat breakfast.  It was gross by any normal standards, but when you haven’t eaten in several days, even greasy, rubbery eggs and sausage at the hospital will bring you delight :-)  
Late on Monday morning Dr. Beaumont (that same on-call surgeon) brought in syringes and had me lie down on my side and drained as much of the spinal fluid as he could which had been flowing into other cavities and creating pockets of fluid where we didn’t want them.  It sounds as though he drained a whole lot of bloodly spinal fluid.
I still got to have some nasty lunch and dinner and they explained that my procedure would be on Tuesday, sometime.  My surgeon was out-of-town at a conference, so I was being fit in with Dr. Dowling  (I think he moved / cancelled his own surgeries) to fit me in Tuesday at 1, because he was filling in for Dr. Dacey’s service, in case emergencies like this came up.
The surgery was Tuesday in the early afternoon, but while they expected this leakage had created a bit of damage to the dura as it flowed in and out, they were not prepared for the severity of damage.That spinal fluid had “shredded” the dura all around the incision point.  I guess it was far worse than they thought and they had to put in a lumbar drain which had been “a very remote possibility.”  It wasn’t so bad that they couldn’t put the skull back together (they said there was an even more remote chance they may have to use a wire mesh), thank GOD!!!
The surgery to correct the structural problems [stemming from the original surgery] was really a repeat of the first surgery, except they didn’t have to go through the dura into the brain.  They simply went into the skull, removed it, repaired the dura and then worked backwards repairing structures along the way.
The problem is that, because it was so severe, we could do all this and have all the same trouble, so they needed, in this case, to put in the lumbar drain to keep that from happening.  You see, the brain is capable of producing 30 mL of fluid every hour.  Well, we don’t want too much fluid pressure or it might seep through the incision site again and we’d have the very same problem.
So they open a hole in my lower back, insert a shunt into my spine with a small tube (looked like a small string) coming out and hanging out of the hole.  They they take...   welll, I don’t know, think about a plastic sheet a little thicker than a latex glove material, but the same consistency.  They took a sheet of that and sealed over the whole hole (with the whole in the middle and then they use those sheets to completely cover my lower back so that it formed several layers and then taped all around (an aside:  think about sleeping for days wrapped in plastic wrap.  Not cool.
That small tube sticking out from under the “medical grade,  glued down, ‘plastic wrap’ connected, then, to a hub which then connected to a thicker tube which ran down to a contraption on a pole.  I had to trust the nurses to be attentive and drain only 10 mL each hour.  There were several valves which had to be carefully turned on and off, but I became very nervous when we asked about the side-effects.  They said it was unlikely, but the possible complications were, if the site became “exposed,” infection; or if too much spinal fluid leaked out there would first be queasiness, then a severe migraine and, finally death. This is what we definitely didn’t want to have happeni!
Well, that gets us through an overview of the first and second, corrective, surgery as well as some of the complications that could arisel
After the procedure Tuesday I did great and that takes us to my mext blog on the day from hell:  Wednesday!!!


Friday, April 20, 2012

Remembering Surgery

image found at: http://www.lavidarollercoaster.com/2011/01/waking-up-from-anesthesia.html
The last time I had surgery, in February, the anethesia had some weird effects, if you follow our blog you may remember some of them. The biggest thing was that when I work up from surgery I thought it was the night before (surgery) so I thought my wife should be there and that I was at my in-laws. I started asking strangers where my wife was and became agitated and yelled for her. I was also hot and began trying to tear off whatever bedding they had on me and pulling off my gown.

I don't remember any of this, just vague recollections...so I'll pretend (in my own head) that it was just a dream.

Once I had been awake for a while I could remember more, but just back until I checked in at the surgical waiting room. But clearly I lost a few hours on either side of my surgery. It was completely different this time. Expecting that I wouldn't remember anything, I made videos while I was in pre-op to make sure I would remember something of the experience.




After the first surgery I thought that, in a way, it was cool that I lost those hours before surgery because all the anxiety, all the worry, all the doubt that I must have been feeling (that sour feeling in the pit of your stomach before you're about to do something you don't want to do) are forgotten. I mean, if I don't remember those feelings they can't be real to me, right?  Who wants to remember the bad parts????

Well, this surgery was different because I sure do remember everything. Yup. Nearly everything!  I remember the ride to the OR in my bed. I remember my wife sitting with me. I remember saying goodbye to her as we wheeled away. I remember making jokes (i'm sure they were bad/cheesy) with the Surgical Team as I was being positioned in the OR.

Had I just had the videos to remember that hour, I could control the memory and make it just as happy as I wanted it to be...but I would have missed all the moments I mentioned. Pre-op time would have been a recollection of me, the way I wanted it, but memory works differently. I don't see me in the memory, I experience my wife, doctors, nurses and staff. I experience my father-in-law, Bob, stopping by incidently to bring something to carrie.  I would have missed the teary goodbye with my wife.

image found at: http://www.familypromiseofmc.org/family-promise-snapshot-of-2011-in-review/


I want to suggest that memories aren't just in the photos of our albums or the videos in that box in the basement. Now don't get me wrong, those are great and they trigger memory, but that's all they are. Often, too, these triggers are just the happy moments, the smiles and laughs rather than the crying and frowns. But our experiences are more than just the laughs, our experience / our being / our relationships are also in the tears.

Sometimes, especially in contemporary times and in Western culture we try to only remember the good times, but we do a disservice to ourselves, our experiences, and our loved ones when we don't honor the whole experience of life.  We must strive not just to be shallow and live in a small spectrum of our relationships, experiences, and memories... we must be whole and complete.

I suggest that we can experience more of life, get more from our relationships and find greater fulfillment when we open ourselves to the laughter and tears; the smiles and the frowns; the joy and the sorrow.

May you find wholeness this week, wherever you are!



Wednesday, April 18, 2012

Tuesday in ICU: A Video

Here is a video from after the surgery.  We had been in ICU for about 30 minutes or an hour (Time moves differently after a surgery sitting around a hospital).


After Surgery: A Video

So here is a video of Scott as he came out of post-op and got settled into the ICU.  You can see that no matter how many drugs they pump into him, they can't shut him up :-)


Tuesday, April 17, 2012

A Health Update: Video Edition

I wanted to say "hi," and not just type it.  So I coerced Carrie into holding my iPhone and making this video.



And I want to thank the many people who have supported us along the way:


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.

From Pontiac to St. Louis: The Transfer




I forgot explain arrival at Barnes-Jewish. I've never been transferred from hospital to hospital, but I guess we assumed that we'd get admitted and wait for a room and paperwork, etc. No. It was amazing. They already had me assigned to a room before we left pontiac and when we arrived the paramedics took me directly to my room. Of course, it wasn't, exactly, straight to my room. The paramedics were from streator and so neither they nor I knew how to get from the ambulance entry to 11579a. It took three staff members from BJC before we got proper directions. It is such a big hospital that the first couple staff members had to ask others before we had directions.

Of course, that is the exceptional thing about Barnes-Jewish, you expect to get lost in the big-ness of it, but staff are so friendly that they will walk you all the way to your destination just to make sure you get there. Boy, the staff here has been tremendously helpful.


After my last stay the public relations department contacted me thru my doctors to ask if they could use some of my videos. To do so I needed to fill out a consent form. When I got here I realized that they should bring the forms while I'm in the hospital or I'll have to find them, fill them out and mail them back. I has just told a nurse that I wanted the PR department to know I was here. You know they didn't have a chance to call? Nope, the PR department saw my tweets on twitter and stopped by just to see how I was doing. An administrator, Tracy, who is with quality assurance found out from the internet that I was here and stopped in to check on me.


This is a far-cry from 'getting lost.'


Monday, April 16, 2012

Day 2 - Getting to St. Louis.

image found at:  http://www.epmonthly.com/whitecoat/2010/05/florida-verdict-threatens-ems-availability/ambulance-2/

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.