I Have this Feeling…In My Gut, part 2

I guess I should continue where I left off, huh?

I went to the GI specialist on Tuesday.  He was pretty sure it was appendicitis.  He thought that the appendix may have even burst and I’d been walking around with a burst appendix.  He sent me for scans on Wednesday morning.  Upon seeing the scans I was sent straight to the Emergency Department at BroMenn for surgery.

If you are wondering how a person walks around with a burst appendix, it is a good question.  Here is the story of Martha Little, news director for WBUR.  She lived with a burst appendix for weeks!

The appendix had not ruptured so they were able to do the surgery laparoscopically and was in the hospital overnight.  I cannot praise the nursing staff enough.  They took good care of me…and got me home quickly where my wife could continue caring for me.

I’m doing well, now.  I’m in some pain, but I have medicine to help with that.  I’m being well-cared-for and my church is in good hands.  My wife and other clergy are covering for me while I recover, but my congregation is amazing and I can also count on the people of the church to make sure everything and everyone is cared for while I am gone!


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.
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!

Oh, The Things I have Learned
Don’t laugh at me:  Those aren’t my feet.

Over the past few days I’ve had many “firsts.”  I mean- we’ll start with the obvious (and redundant):  brain surgery, but that’s only the beginning -and in a way- the smallest of the “firsts.”

One of the weirdest moments came when my wife started hounding me about changing out of my hospital gown and started pressing me to wear “real clothes.”  Not just real clothes…  she was real bothered that my clothes didn’t match (and let’s face it:  they were gross, smelly and dirty, even I knew that!!!!)  I had a quick and easy solution (well, at least, in my head) to solve all problems at once!  I suggested that I change into a black pair of comfy sweats that I had brought from home and that my blue sweats could go into the laundry.  Heck, I even suggested that she put my comfortable (yet well-worn) robe in the laundry too!!!

NO!  That would not do,  My robe was plaid with maroon and had navy blue in them, my gown was white with light blues and greens (and don’t forget that she thought the hospital gown was terribly ugly, anyway).  Oh, but the most appalling problem (and this was nowhere near this boy’s radar screen:  My sweatpants which I had suggested from home were BLACK.  OH MY GOODNESS!  How could I make such a faux pax???

Our impasse was simple, of course, even if I still don’t truly understand:  I cared only for comfort (I’m sure I’m not the only one out there who feels this way in these times) but my wife could not imagine -even for a moment- that comfort would be possible without feeling “put together.”

Okay, and a little more honesty from me: I probably haven’t learned all that much.  I’m still sitting here in mix-matched clothes, feeling very comfortable, but far from pretty.  (Come on, folks, pretty is why I have Carrie.  She is beautiful enough for the two of us together, right???

Okay, this aside, I have learned much over the past week or so.  I’ve learned to take my time.  After a surgery you can’t just put on a shirt.  How crazy is that?  An occupational therapist had to teach me to put on my own shirt again.  Oh Lord!  Putting on socks or pulling on pants -especially when you can’t bend over- makes everything a new learning experience.  Everything takes more time and everything takes one step-at-a-time!

One thing that will take a lot of time will be my relationship with my wife.  Don’t misunderstand me!  She has stood by me and patiently helped me moment-after-moment and time-after-time.  it isn’t easy for her or for me, by the way!  At times I get frustrated when she needs to go off and do things for herself -and there have been times when I get really sensitive and crabby with her and tell her to just stop moving and fussing.  Sometimes I need her just to sit and let me try something on my own.

It can be a real pain.  I can see how couples can so easily disintegrate after a family trauma, because learning to communicate again can be difficult -and, often, I’m sure- unbearably slow.

I won’t pretend this has been easy.  Nope.  Not at all.  But we have learned a few things along the way:

  1. If you know a surgery or trouble is headed your way, find a nice gesture to make, like planning flowers or candy or a gift that will come in the midst of the trouble, especially if you are the one who will be cared for!
  2. When you are feeling frustrated or angry…don’t hold it in and let it fester.  Talk to one another about your very real feelings.  In the car today, Carrie broke my heart when she asked, “do you still like to be around me?”  She told me, “It sometimes feels like you don’t, lately.  It sometimes feels like I do everything wrong”  Oh my!  How bad did I feel!?!  She didn’t have to say that, but keeping it inside would not have given us a chance to share with one another and set our love straight!
  3. Spend time together.  During this past week or two I keep handing Carrie piles of papers and forms and medical stuff that I am just overwhelmed with.  Sure, she has taken care of it and been great…but I keep dumping on her. That isn’t how couples make it through.  We have talked about when we each do our best work (morning for her, night for me) and we’re developing a system so that we don’t dump on each other.  This evening I brought in a piece of cake and poured two glasses of milk and then we sat together (had a bite of cake) and enjoyed some milk.  It was a simple thing, but it fit our day.  It gave us some respite and solace in the midst of madness and recovery.  Not only that, but then I was able to (at my 2 am med time) sit down and write thank-yous and notes without feeling as though I’d spent my evening alone.

Oh- I don’t know if any of this is helpful.  Maybe none of it applies to you, my friends…  but I suggest that in the midst of trouble and turmoil we can all learn something from my occupational therapist.  Let’s start putting our socks on carefully -one foot at a time; let’s start putting our shirt on head first and one-arm-at-a-time so we don’t rip a stitch….  and let’s carefully rebuild our relationships (one step at a time), so that we don’t lose the people most important to us.

My wife is the person who holds my world together right now.  I do not have the luxury of forgetting that, nor does she, I suspect.

Well, my 6 am medicaiton will be soon approaching.  Time for me to head back to bed, get a sip of water, and turn off my laptop so that my beautiful wife can fall back asleep from where she lays comfortably in the bed across the room  (As an aside:  A recliner is a poor excuse for a bed, Lord help me back to a real bed, real soon!!!


PS:  Carrie made me stop publishing these without her input, because my brain and fingers aren’t always working together yet.  I needed an editor.  So, note, I wrote this in the middle of the night, but my wife has been sweet and helped me this morning so that it would be read-able!!!  Is’t she great!?!