So I actually DO have a reason for having neglected this blog so thoroughly.
Starting mid-September, my leg (the one that had the graft in May of 2010) started hurting more than usual, and getting more warm and swollen. I had xrays and blood tests and even a bone scan. Nothing indicated an infection of the bone, but nothing was entirely "normal" either. We were in the middle of investigating possible causes, while I fought increasing pain. The following bullet list is a short summary of what transpired after the bone scan.
- Sunday, 10/30/2011
At some point before this, I acquired a small, innocuous looking scratch on my graft, close to the edge that is stuck to the front of my tibia. It didn't hurt, didn't look infected, didn't cause a fever... and I have no idea where or when or how I got it, because I can't FEEL the skin where the graft is. Not sharp pain, that is. I can feel pressure, sure, and heat, but no sharp sensations. On Sunday, Derek and I noted and commented on the scratch and what appeared to be a bruise beneath it. Just a little pink, and a little warm. I already had an appointment scheduled for Monday, to discuss pain control options.
- Monday, 10/31/2011
By Monday morning, my shin was huge and hot and red, I felt like I'd been run over by a Mac Truck, I had a fever, and was genuinely sick. Sick enough that after drawing cultures and other labs, my doctor tucked me into an ambulance and sent me away to the City. By this point, every breath made my leg feel like it was being smashed. I was in tears, shaking and sweating. I will pause here to say this: Whoever decided that paramedics can start IV's and administer Fentanyl at their discretion... they are something along the lines of "hero" to me.
We got to the Hospital, and I was taken straight to a room. NO ER, no triage, nothing. Just up to a room. More cultures were drawn, another IV line was started, and a circle was drawn on my leg marking the edges of the red, swollen, hot skin. I was then sent for an X-Ray, which I assumed would come back normal - the last one had. But no, it did NOT. It showed fluid and air building up in the deeper tissues, indicative of a fast-moving infection.
Then I met my surgeon, Dr. J. I had him and his resident assigned to me, another surgeon, Dr. A, as well as Dr. M, Dr. C, Dr. M and Dr. F, plus their interns. It was a herd. I wish it could have all been done by just one person. Less intrusive that way.
7:30 that night I was in surgery. The operation went fast. They didn't have to remove anything terribly important, and left the incision (about 6 inches long) open and packed. I woke up in recover at about 9:00 and I swear, I had NEVER been so miserable in my life. My temp was up over 104, I was pouring sweat, covered in goosebumps, shivering so hard it was more like convulsions, crying so hard, throwing up, and my leg felt like a combination of fire and being crushed, more intensely than I could comprehend. It was almost midnight before I was in good enough shape to see my hubby. They said I was septic, and that's why I was so miserable. I had a great night nurse who kept my double room just for me, and took care of me so well. Next morning my roommate arrived and I could. not. do. it.
I don't like PTSD. I don't like that an other's simple presence when I'm not feeling well or perceive that I am vulnerable, is enough to send me into full-on flashbacks and panic attacks and terror and my brain goes into lock down mode. There is no reasoning to make it stop, there's no gentle tones or persuasive words. I spazz out in a world-class manner. So my good ol' nurse got me moved to a private room in a different unit. The staff THERE were great too.
- Tuesday, 11/1/2011Tuesday morning, I found out that I was now on Vancomyacin, Rocephin, merepenem, and flagyl. And I got my PCA pump. Oh that wonderful device with the stupid nose flap. Hospital brought me in a laptop to use... mostly it just sat there playing music or shows off of Hulu. That afternoon, I went back into surgery for more debridement and dressing change. Late that night, I was taken to a procedure room and sedated for a dressing change.
- Wednesday, 11/2/2011 I continued to complain of pain on the inside of my shin bone - not where the abscess was. And in my ankle. It kept getting dismissed. Temp was staying mostly normal. They told us the organism was susceptible to the meds I was getting (e. Coli - and NO, I don't know how anyone gets e. coli in their leg, but apparently it's not as far fetched as I thought). I pointed out a second area of possible infection. They agreed.
They wanted to unpack, debride, use pressurized water to cleans, and then repack my wound. And I flipped again. NO WAY. Not with me awake!!! They ran around and around with me about it, until Dr. J finally asked what the real problem was. I explained the flashback it was conjuring. And from then forward, it was sleep-city.
- Thursday, 11/3/2011 Thursday morning, I went to a procedure room and was given conscious sedation for my dressing change. I kept complaining about the area near my tibia that hurt, so they ordered an ultrasound to look for free fluid... and boy howdy, did they find it. Nice little abscess under the skin but mostly fluid buildup around the bone. The took me to the OR, knocked me out completely, did a needle aspiration on the new abscess and tried to get the deeper fluid, and then aggressively cleaned the initial incision and performed a delayed closure. They left a lot of drain tubing in place.
- Friday, 11/4/2011 Was still on the Fentanyl PCA. Dr. M wanted me to go home... I knew I wasn't ready. Dr. F, from infectious disease made a plan with my husband - I would go 24 hours with IV fluids but all meds would be oral, unless things escalated, before I would be allowed home. Surgery liked the plan, but said we should wait till Sunday, so they could pull the drain before I left. So we left THAT as our plan.
- Saturday, 11/5/2011 1/2 of the drain was removed. I was taught how to do my own dressing changes, shown what to watch for. There was some iffy blood work, but they decided it was contaminated by skin, not by actual blood-borne pathogens. I was off the PCA. Miserable, but off the pump and ready to go.
- Sunday, 11/6/2011 Sunday, they pulled the rest of the drain, said what to watch for, how to care for things. At that time, a secondary abscess just medial of my tibia was noted. It was felt to be small enough that antibiotics alone would address the problem. After much waiting around, I got to LEAVE. To go to MY HOME.
- Monday, 11/7/2011 I did my dressing change as ordered - I even filmed it for documentation. The rest of the day, I spent sleeping.
- Tuesday, 11/8/2011
Because I was uncomfortable waiting a week to see my surgeon for a recheck, my family doc agreed to take a look. He did so, and called the surgeon. They had me go NPO immediately in preparation for seeing the surgeon on Wednesday.
Unfortunately, that night, I took a shower. My first since the surgery. They had finally given permission and it felt SO SOOO GOOD. A sponge bath just can't even compare. About 7:50 PM I was all relaxed and sleepy and fell asleep on the couch. I woke up screaming at the TOP of my lungs at 8:05. My head was the WORST pain I can imagine. Searing and pressure and throbbing with my heart beat and made worse by sound and light and trying to lay flat and turning my head or moving or coughing or talking.I was screaming too much to call 911, and my husband was at work. They got there though. I rode lights and sirens (and lots of IV meds pushed and some crazy EKG monitors - finally a nicely documented run of SVT).
Doctors started talking meningitis, encephalitis, and big scary bad words.
They still don't know what caused it. Spinal fluid came back indicative of SOMETHING, but non-specific. CT didn't show any large abnormalities. So I got me a room with a room mate and the pain and the PTSD fed off each other until they ended up moving me up to the cardio floor, into the only private room left in the hospital.
They had me on Vanc, Rocephin, and Merepenim. They switched the Rocephin to Timentin, and the merepenim to Erdepenim. They also added in Acyclovir. I had to have two lines again, because the meds couldn't mix together outside the body.
- Wednesday, 11/9/2011
Finally, things under control enough that I SLEPT. And SLEPT. And then SLEPT some more.
- Thursday, 11/10/2011 Home sweet home.
- Wednesday, 11/16/2011 Recheck with the surgeon. He informed me I needed my secondary abscess drained. He recommended a standard I&D, under anesthesia. I consented, and planned for Thursday to be a nightmare.
- Thursday, 11/17/2011 So much for a nightmare. The day went well. Operation was really fast and smooth, recovery was smooth, they are hopeful that maybe this could be my last trip to the OR for this problem.
- The weekend went well, but the defect was growing worse. And today, my surgeon has prescribed honey. Like from bees. That's what I put in the wound. I thought he was crazy. But it turns out it's more widely known than I thought.
I am a Christian. I am a wife. I am a daughter. I am a friend. I have babies in heaven. I take pictures. Love to write. I strive to show compassion.
Derek is also a Christian. He is a husband - to me. An amazing husband. He loves intensely. Laughs freely. He is strong. I am amazed when I consider that he chose ME. I love him. He loves me.
This is my Gramma. Eileen. Of everyone I have ever known, she is the one I desire to be like. She was wildly compassionate. Generous. A woman of integrity. Goofy. Cute. My hero. She is in Heaven.
Bayleigh is intense. She is small. She is beautiful. Sweet. Wild. Mischevious without limits. And she chirps.
Furbis is the epitome of catness. He is handsome. Big. Sweet. Dangerously intelligent. Strong. He breaks things. And talks.
Calliah is special. Furbis chose her. She is sweet. Not very smart. Funny. Pretty. Puts her toys in water. And the more she loves you, the harder she bites.
Izzy is super sweet. She's pretty. Passionate about playing. She licks things. She doesn't talk much. Snuggles a lot. And sleeps on my head.