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.

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!!!

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.’

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.