Each time I wake up from surgery, it hurts. There is always pain. This time it was different. Pain is an understatement. It felt like a board had been wedged into my upper back and ANY movement made the pain a million times worse. I don't really know how to describe it besides overwhelming. I just kept pressing the little green button that pumped morphine into my veins and took as many pills as I was allowed. I spent a lot of time crying like a baby.....mostly because of pain but also because of frustration. When you can't do ANYTHING by yourself and doing ANYTHING hurts it just sucks.
The week had begun with the scheduled myelogram. By the time I had the myelogram I had convinced myself that it was all in my head. My leaking was over and I was just crazy. I was expecting the myelogram to be normal, I really, really was. There was a lot of confusion on the morning of the myelogram that resulted in Tommie chasing me all over the hospital while lugging 2 suitcases and my purse. By the time the myelogram was over, we were both exhausted. Luckily, this myelogram was WAY better than the others. They did not sedate me to prevent seizures so the initial sticks hurt (as usual) but nothing to crazy. They used a lighter dye so when they injected it, the pain was minimal (it is usually the worst part). I sat up afterwards so that the dye would drain away from my brain and I was SUPER hydrated. Not long after the procedure, they had us in a room. We settled in and watched A.merican Idol. I felt good. Normally myelograms wipe me out, but not this time. It was about 9pm that the neurosurgery resident (Tommie named him cutie) came in to let me know that they did find another leak and that I would be having surgery the next morning. The next morning Dr. S came in and told me that I had an anterior leak in the T4/T5 region. The plan was so go into my back, remove several discs, saw away at some bone, and access my dura to find the leak. Once the leak was isolated, Dr. S would patch it and then Dr. A (the other neurosurgeon) would put a titatinium plate along my spine to stabilize the area where bone and discs had been removed. Dr. S went on to tell me that this surgery would be significantly more painful and have a longer recovery than the previous surgeries. The surgery was on a Wed and Dr. S made it clear that I would likely not being going home until the following week (I was expecting to be home by Sunday).
The next morning I was wheeled into preop before the surgery. The anethesiologist told me I would wake up in pain but that they would be there and would do everything possible to manage my pain. He said, "you have been on narcotics for awhile, right?" I said, "yes." He said, "you must be pretty tolerant." Me, "yes." He turned to his resident and said, "why don't we give her 20mg of morphine and 10mg of IV methadone?" Me, "uhmm....that sounds like a lot, can we just start with the methadone?" He then proceeded to give me IV methadone. I don't remember much after that.....just that I really didn't care about ANYTHING and the room was hazy. The next thing I knew, I woke up in recovery and IN PAIN.
I was wheeled back into my room and SHOCKED to find out that it was 8pm. The surgery was supposed to take 4 hours but it took more like 8 hours....yikes! I was also suprised to hear that I had a large anterior thoracic leak and they had operated from T2-T9, leaving a very large plate in my back. The parade of surgeons, nurses, and therapists that came into my room over the next week all commented on how big of a surgery I had undergone. I really had no idea it was going to be so major. Or that the recovery would be so long. The first 2 nights were horrible. I had to lay flat (but I could be on my side). The nurses had to turn me every few hours and prop pillows all around me in an effort to find a comfortable position. It didn't matter, I just could not get comfortable. I learned about sponge baths, total helplessness, and humility in ways I could have never imagined. Poor Tommie tried to help but there was nothing anyone could do to make it better.
To top it all off, the first 48 hours after surgery I had a fever up to 104 and was hypotensive (low blood pressure) and tachycardic (fast heart rate). In came the Internal Medicine doctor and Infectious Disease specialist. I was started on antibiotics for a presumed sinus infection and ear infection.
I learned that nurses really need to get educated about pain. It seemed like every other nurse was afraid to give me my pain meds as prescribed because they were afraid it was to much. Hello...the pain regimen was prescribed by a very experienced pain team! After the 1st night I learned that the pain team was available 24/7 (despite what the nurses led me to believe) and would adjust my meds anytime. The pain team was incredible. But, from them to the nurses things tended to get lost in translation. The nurses also had a really hard time with the PCA (patient controlled anethesia). It must be really difficult to operate because it was a problem for every shift. One night I kept telling Tommie that the PCA was not working. No matter how much I pushed it, it didn't seem to be helping. I asked the nurses to check the PCA...2 different nurses came in a checked. Everything was fine. Ok. About a hour later, the pain team nurse came in and checked my settings. I had been put on a setting of 0.6mg/hr instead of 6mg/hr and my lockout was set at 0.3mg/8 minutes instead of 3mg/8 minutes...no wonder it didn't seem to be working! The entire experience was eye opening for Tommie and me.
Don't get me wrong, there were also good things. I had a lot of great nurses and all of the doctors were AMAZING. But, the little things really do matter. For example, closing the curtain in front of the door during a sponge bath so that when people walk in the door they don't see you laying completely naked in the bed. I always appreciated the nurses that took into account shift change and checked on you before it started. I know Tommie and Mere appreciated the nurses and techs that were quiet at night.
After a few nights, it became clear that I would be in the hospital well past Sunday. On Friday, Tommie called her mom and found out that she was sick. She had taken to her bed and was just not doing well at all. Since Tommie is all that her mom has, she really needed to get back to LR to take care of her. So we arranged for Mere to come in on Sat and Tommie to leave. The girls stayed at our house with my mom. Of course, she was threatened with her life if she did anything with our house!
In the few hours that I was alone (Tommie was on her way home and Mere was on her way to LA), they let me get out of bed. A PT (physical therapist) came and put a walker in front of me. I laughed....I don't need a walker! So, I stood up and promptly fell down (the therapist was there to catch me). My right leg had no strength and I couldn't really tell where it was in space. I also got shooting pains down both my legs when I flexed a the waist. The therapist managed to get me up with the walker and we walked a few feet before I couldn't do anymore. I was so frustrated and a little scared. They had also taken the foley catheter out and I found that I couldn't go to the bathroom. Great. My legs don't work and my bladder doesn't work. Not looking good for the home team. Dr. S ordered high dose steroids and scans to see what was happening. Now I had a physiatrist (physical medicine and rehabilitation doctor) and urologist added to the mix of specialists trying to put me back together. Mere arrived not long after the PT left so she was there for the onslaught of new doctors and tests.
The next few days was spent with me trying to get up and around more. Mere helped me shower and I tried to sit in a chair for a few hours/day. I was starting to feel better. My fever was long gone and my pain was getting better. I was off of the PCA and managing well with oral meds. The MRI had not showed much and I was getting a little better with the high dose steroids. The physiatrist wanted me to go to inpatient rehab in California. I opted a big fat NO on that one but agreed to do outpatient therapy in Little Rock. I spent the day on the phone finding out the best place for spinal cord injuries in LR and working out the details of what I needed to do to get started. We were hoping to go home on Wed or Thurs.
Then, the results of the CT scan came. There was a screw that was protruding into my spinal canal on the left side (the right side was the one with the problem). Dr. S didn't think that the screw was causing my problems but was worried that it could become problematic with time. He felt that the best course of action was to go in and remove the screw. The surgery would be much smaller than the previous one but the pain and recovery would start all over again. Cutting into all the muscles of the back and retracting them during surgery causes a lot of post op pain. Ughhh!!!!
So, I went back to the OR on Wed. The surgery was quick and uneventful. The next 2 days were spent in severe pain, with the PCA, in bed, and generally miserable. On day 3, I was able to start getting up, showering, etc. I was PCA free and the foley catheter was out again. All the things needed to start talking about a discharge date. Somewhere along the line, my liver function tests got out of whack so I was got to have an ultrasound on my liver (which was pretty nonspecific). Luckily, my numbers returned to normal towards the end of my hospital stay.
By Friday, Dr. S was willing to set Sunday as a go home date. Meanwhile, my mom had bought a shower seat for the house and Tommie had found a walker for me to use at home. We bought our tickets and Mere got all of my prescriptions filled on Friday so we were ready for Sunday. Sunday morning went well and we made it to the airport without any problems. The flight was challenging and left us both exhausted. But, we were so happy to be home on Sunday night and with our girls. We let Syd stay home from school on Monday so we could all just chill out together.
I am getting better by the day. My legs are getting stronger and my pain is getting more manageable. I start physical therapy next week....yeah! Dr. S assumes that I am done leaking for now. Of course, we never know until I get off pain meds and over the surgery. Either way, I need a break from surgery and LA for awhile. My doctors are anticipating about 4-6 weeks of recovery.
Without the generosity of friends, family, and our church....we would be in so much trouble. The entire time we were both in LA, our church brought dinner for my mom and the girls. They continued to bring meals to us after we returned home. They have been so generous with their time, money, and love. It has truly been overwhelming and reminds us both of how important it is to pay it forward. A good friend of mine and her husband (both fellows) also donated money, which blew us both away....their generosity brought us both to tears (and still does every time I think about it). Mere has started picking up some substitute teaching gigs at Syd's school but she can't work full time because I can't be left alone for long periods of time (since I am still VERY limited in what I can do). Plus, I need someone to take me back and forth to PT. I am hoping and praying that I can go back to work in April....PLEASE!!!!!!
Ok, I need to end this super long post. Thanks for hanging in to the end (if you are still reading)!