Wednesday, May 26, 2010

How I'm doing - You may be sorry you asked :)

First, I want to say thank you so much for all the well wishes, prayers, positive thoughts sent out to the universe and love coming my way over the last month. I thought this might be the simplest way to answer all of the incredibly thoughtful inquiries about how I’m doing, how the surgery went etc.

The surgery went really well, the hospital stay, not so much.

The day before surgery, my case manager, Stacy, and I met with an anesthesiologist/member of the hospital’s pain management team. He spent about 40 minutes with us, talking about medications I’ve used in the past that worked well as well as those that didn’t and about all the ways my brain injury complicates decisions about anesthesia and pain medications. Together, we created a Plan A for drugs he’d use during the surgery and a Plan B if he needed to add more.

In terms of post surgical pain management, while he was very skeptical that the relatively low dose of Demerol via a patient controlled IV Pump that had worked well for me in past surgeries would be enough pain medication for this particular surgery, he agreed to write orders to start with that, but then also wrote out a Plan B in case he was right and Plan A was not enough to control the pain. He reminded me how pain interferes with healing and made me commit to letting them know if I needed more pain relief even though he understood that I tried hard to avoid taking a lot of pain medicine because it’s so tough on my brain injury symptoms. He explained that the hospital very rarely uses Demerol via the patient controlled pump because it usually isn’t strong enough to control post surgical pain. I explained that I’d had cervical spine surgery a few years ago and a hysterectomy a few years before that and I did great on a fairly low dose of Demerol and surely, I said, this surgery couldn’t be more painful than those. His skeptical chuckle foreshadowed things to come. But I assured him even before my brain injury I was always a cheap drunk and my case manager assured him I had a bizarrely high pain tolerance and so he agreed to start with Demerol.

We were both incredibly impressed on so many levels. First, here was an anesthesiologist with a good “bedside” manor. We thought that was still illegal in most states. In addition, this hospital had a team of doctors who were responsible for pain management, rather than leaving it up to the surgeons. Given the reality that both anesthesia and narcotics effect people with brain injuries more significantly, we were both relieved that this part of my care would be directed by experts. Further, I felt much less stressed knowing that before I even was admitted to the hospital, while I was still able to think clearly and communicate well, I was able to have a detailed conversation with a pain management specialist and there was now a detailed written plan of care in my chart about what drugs to use and what to add if necessary. I didn’t have to worry about trying to understand and communicate once I was drugged up, which is no small feat for my injured brain. All I would have to do is let someone know if I was in pain and it would be taken care of in the way that would take the least toll on my brain. Huge sighs of relief all around.

But, that was on paper. Sadly, that’s not remotely what happened in the real world.

When I woke up in recovery, the severe leg pain that had been debilitating pre surgery, was completely gone. The surgeon had said that this was a remote possibility but that it was more likely it would take a few months to go away. I was doing the dance of joy. Okay, well, I couldn’t really move at that point, but my eyes were doing a happy jig to be sure.

While the leg pain was gone, my back hurt like a son of a b##ch, (almost as if someone had surgically opened me up, moved stuff around and taken stuff out. H’mmmm.) Soon it became apparent that the pain management guru was right, this low dose of Demerol was not cutting it. I was in a lot of pain and it was getting worse. When my case manager realized I was pushing the heck out of that pain management pump button she and I agreed I needed to ask for more pain meds. I did. That was sometime between 12:30 and 12:45pm.

Just a few minutes shy of 5:30 in the afternoon, they finally increased my pain medication. Yep that’s right folks. I started asking just after 12:30 and a mere 5 hours later they acted on that request. Let me clarify that, 5 hours later the doctors finally acted; the nurses had been relaying my requests (my requests, Wood’s requests, Stacy’s requests) all day long. By the time the pain management team increased the Demerol, my requesting had turned into begging and here I was, this person who just the day before had been described as having a “bizarrely high pain tolerance” was literally sobbing from pain. At that point, even the nurse had tears in her eyes.

By the time the increase in pain medication was “on board”, I was so tensed up from pain that my entire body went into what felt like one huge “charlie horse” which would take several days to completely go away and interfered with my ability to get up and walk, thereby slowing down my discharge by a couple of days. At one point they were thinking of transferring me to a rehab hospital rather than sending me home since my muscles were in such spasm I couldn’t stand, but thankfully, they didn’t think of that until Friday afternoon which meant it would have to wait until Monday. By the time Sunday evening rolled around my muscles had calmed down enough to allow me to walk with just one person assisting and they sent me home.

To add to the pleasure of that first day, the surgical residents, who weren’t in charge of pain management and apparently didn’t take the time to find out I was on a baby dose of pain meds, would pop in every so often to tell me I was being a whimp. That was so very helpful. (“Thank you sir. May I have another?”)

There was some comic relief however. Every time I turned on the TV with the hope of distracting myself from the severe pain in my back and the massive all body charlie horse, the hospital channel was on and a video about pain management was running on a continuous loop – how the hospital takes pain management very seriously, that it’s a top priority, spelling out patients rights when it comes to pain management which included having their complaints of pain responded to immediately etc etc etc. I felt as if I were in a TV sitcom world that only Larry David’s comedic genius could devise. I could have been George in a Seinfeld episode but I was hoping to be living in a Curb Your Enthusiasm world, because in those Larry David gets to unleash a barrage of obscenities at his antagonist whenever the thoughts pop in his head.

The next day, a pain management Attending Physician, with two residents in tow, appeared explaining that they rarely use Demerol on a pump and so there had been some confusion about how to increase my dose. He told me that at 5:30 the previous afternoon, when they finally had come to increase my pain meds, they had merely increased the Demerol dose which he could see was clearly not enough to enable me to get up and walk . So, they finally added a second drug and while they were not quite apologetic, it was clear that the Attending at least understood that someone had dropped the ball. I didn’t ask why they hadn’t just followed the plan that was in my chart because, call me crazy, it’s my personal philosophy that when one is in tremendous pain, it’s counterproductive to alienate the people who are the keepers of the pain relief. Thankfully my impulse control was able to keep the Larry David Curb Your Enthusiasm style monologue that was playing in my head from spilling out.

Then there was the breathing. Now I know what you’re thinking: good golly this woman is demanding. First she wants to not be in excruciating pain and now she wants to breath, what an overly developed sense of entitlement she has. It’s true – I can be so darn demanding.

While the hospital TV channel didn’t seem to have a video about the hospital’s policy regarding breathing and while I did not check the hospital’s Patient Bill of Rights to see if breathing was included, I feel confident going out on a limb here and saying I’m guessing the hospital is in fact in favor of their patients breathing. I would even venture to say that enabling their patients to breath is, in all likelihood, a hospital priority.

Soon after I was transferred from post-op to my room, a Respiratory Therapist came in and listened to my lungs. She said they sounded clear and in spite of the facts that I have asthma and that I’d been under general anesthesia for nearly 3 hours, she said I didn’t need to use my inhalers or even an Incentive Spirometer, which is the little thingy you breath into every hour after surgery to make sure you continue to expand all of your lungs when you breath and that fluid does not collect in them, both good goals in my book. By that night, I was coughing and you could hear the fluid when I coughed and even more alarming, each time I dosed off I woke up gasping for air. Again, I know picky picky – I want to be able to breath and sleep simultaneously. But, being the overly demanding person that I am, I buzzed for the RN and asked her to call the Respiratory Therapist.

The same Respiratory Therapist came in, listened to my lungs, verified that there was in fact fluid in there and that my lungs were not fully expanding when I breathed. Oddly, she said I still didn’t need to use my inhalers but she did bring in an Incentive Spirometer. The next night, the coughing and gasping for air when I dozed off continued but by now I was wheezing loudly and I could feel that I was only using a fraction of my lungs when I breathed. I again asked to see a Respiratory Therapist. This time I was told she’d already been here and that I should just use your Spirometer. Sometimes my stubborn streak comes in handy, so I continued to ask “Is there an RT in the house? I need to see one.”

Thankfully, a new RT was on duty. She listened to my lungs, which she verified were quite filled with fluids. She quickly put me on oxygen, did a nebulizer-ish treatment and had me use my inhalers. When she was done and read the last RT’s notes, she was, shall we say surprised, to see the last RT had heard fluid but had chosen not to do anything about it. Keeping with my TV show frame of mind I thought that perhaps I was now in a Grey’s Anatomy episode and the previous RT and the Pain Management Residents were distracted because they were in a love triangle that was coming to a head. I wondered if I should at least try to brush my hair in case McDreamy stopped in for a visit.

On the positive side of life at the mercy of University Hospital, as always, Stone was treated like a rock star. He was clearly distressed that the rails on my bed were a barrier to him comforting me to the extent he wanted to, so we let him up on the bed by my feet. He let out a huge sigh of relief when he laid down and snuggled in with me. But, when the pain got so bad I began moaning, he jumped off. The Nurse thought he was worried that he was causing the pain. I didn’t have the heart to tell her I was pretty certain my moaning was interrupting his napping.

When Stone got off the bed, the nurse left and came back with a huge pile of sheets and blankets. I was alarmed at the thought of being rolled around while they put new sheets on the bed as rolling on my side was excruciatingly painful. Have no fear, this comfy pile of linens wasn’t for me. She used them to make a thick comfy bed for Stone. When she was done, she analyzed her work, decided that it just wasn’t quite cushy enough for a dog as spectacular as he, got out two pillows and placed them just so on Stone’s new bed. He climbed in and was a happy camper.

I did have lots of good TLC while in the hospital. Stacy, Wood, Marianne and Ann Marie took great care of me. Ann even had a sleep over with me the second night I was there although she refused to let me put her bra in the freezer.

The first several days home went well although there was some confusion over my activity level. The surgeon’s instructions were to take several short walks each day. The Occupational Therapist who came on day 4 was frankly startled when I told him how far I was walking 4 times each day. He later measured it and it turned out I was walking over half a mile 4 times a day. He called the surgeon to clarify the instructions. It turned out the surgeon’s definition of “short walk” means walking the length of my driveway.

Oops. When the OT explained this to me I was clearly dismayed to which he replied, “Tina, if had just had major lumbar spine surgery, I wouldn’t leave my house for a month and I sure as heck wouldn’t be walking more than two miles every day after just coming home from the hospital. I’ve been doing this kind of work for a long time now so I feel confident in saying, I think that’s how most normal people would react.”

I was frankly confused. It did not compute, but then my niece reminded me of a truth she learned about our family when she was about 10. While at the grocery, she longingly stared at the Wonder Bread and asked her Mother “Why can’t we ever buy white bread like normal people do.” Her Mom explained “Leilah, you might as well learn this now – no one in our family has ever aspired to be normal.” Those of you who have known me since we were teens will attest to the fact that I internalized this family rule at an early age. 

During that first week home from the hospital, when my Rehab Doc who has treated me in the 15 years since I sustained my brain injury, called to check up on me, I told him I was still having a lot of muscle spasm but that we think we had figured out why. All I needed to say was “the surgeon’s discharge instructions were that I should take several short walks every day.” Under his breath, barely audible, I heard him say, “Oh no…”. He knew what was coming. He, who has said probably hundreds of times to me and about me “limit setting is really not her gift,” and “her approach to recovery is that if doing something a little is good then doing it a whole lot more must be a whole lot better”, knew that my idea of a “short walk” and of “several” times a day was bound to be grossly out of synch with the surgeon’s intentions. Hey, at least I’m consistent.

While I do concede that my idea of a short, post lumbar surgery walk, may have been excessive, in my defense, who would say “I went for a short walk” when what they really did was walk to the end of the driveway to get their mail. I think the real question is how sedentary does this surgeon have to be that to him, every time he goes outside to get his newspaper in the morning he thinks he’s going for a short walk. Heck, the typical daily walk Stone and I take would be an Olympic marathon event to this guy.

Once I had a clearer understanding of how much activity I was suppose to be doing and more specifically, once my Rehab Doc took over, giving me clear and concrete instructions about what I was and mostly, was NOT allowed to do, things got back on track so much so I was taking only Tylenol for the pain. Sadly that’s when I made a grave mistake for which I’m still paying a hefty price.

My guess is I’m not alone when I say that whenever I ignore my own instincts, whenever I don’t listen to my little inner voice sounding the warning alarm, it does not turn out well. Sadly, I re-learned that lesson about 10 days after surgery. The Home Care Physical Therapist had me doing an exercise that involved partially standing on a telephone book. It seemed unsafe to me in general, given that the binding on phone books can easily curl or bend and it seemed especially unsafe for me given my problems with balance. I voiced my concerns but she assured me it was completely safe. I ignored the red warning flags I saw waving in my mind, and followed her instructions. (Heaven forbid I let a complete stranger think I was a non-compliant patient. It’s much better to ignore my own well developed sense of what is and isn’t safe for me than to let this person I’d just met and would likely never see again once my Physical Therapy was over, have a negative opinion of me. ) Sometimes it amazes me how many times in our life we have to learn the same life lesson.

So, the phone book’s binding did in fact curl and the phone book gave way and I fell. I landed on my feet, HARD, and while it wasn’t a long way to go, apparently my newly operated back didn’t enjoy the journey or the landing. After I got over the initial blinding pain, I realized the leg pain was back. Sadly, it still has not gone away. The doc did order an MRI to make sure I hadn’t re-herniated the disc, which I didn’t – huge sighs of relief. It did show the remnants of a bleed so they think that I tore some scar tissue which caused the bleeding and that the scar tissue stretched the nerve which is causing the leg pain. Apparently the leg pain will go away once the nerve heals.

As a result of my little mis-adventure, my rehab doc sent me back to bed and instructed me to go back on the Demerol round the clock in an effort to stop the pain so the communication between the nerve and my brain doesn’t get stuck in the pain mode. Yes I know there are lots of folks who would love to have their doctors order them to stay in bed, take drugs and watch TV. It turns out I am definitely not one of them. As of yesterday, I am now allowed to walk the driveway three times a day an increase from last week, (wow living large) I am still not allowed to sit down, twist, bend or squat, I have to continue to take Demerol and spend the vast majority of my time laying in bed. I made sure he understood that I am in fact on the verge of taking hostages, but he seemed unimpressed and still wouldn’t release me from my bed arrest.

And so, here I lay, entertaining myself by answering your “how’s it going?” inquiries with a whole lot more information than you needed or wanted. You can chock it up to too much Demerol and too little to do. Poor Stone is pretty bored but he is getting a whole lot of Mommy cuddles.

Again, I so very much appreciate all the love that you’ve been sending my way. It’s meant a lot to me.