Today is the first day in AGES that I see a glimmer of hope. That I feel like my life is turning a hopeful corner. And not a moment too soon.
It was this past Tuesday as I headed down to the hospital on the all too familiar drive I suddenly shivered at the thought of what was about to take place. Pretty routine at this point. Tuesdays I go to room 5, take off my pants, and lie on my left side with my ass exposed. The nurse and I chat; we make small talk peppered in with discussion about my wound. She takes my vitals then prepares me for the change out. Carefully, she removes the draping, tubing. If it’s a good day the yard of foam jammed into my hip will come out effortlessly. If, like this past Tuesday it is not a good day, she will have to pour saline over the foam in the wound to saturate it and loosen it up. Either way, the foam is removed, I usually wince as the last of it is pulled out, the nurse apologizes for hurting me (It doesn’t usually hurt, but it does feel…bizarre).
Then the real torment begins. First, they clean my hip…which is quite pleasurable actually. I know…sounds sick but really, it feels good! Especially since my hip has been so rashed up and hot because of the rash…the cool soap feels delightful. Then…they measure me. They measure the wound and I hear a lot of talking about 6 o’clock, 9 o’clock, 3 o’clock. The wound is measured with a clock in mind. Since there are different things going on inside the wound they have to make notes of all of them. I kind of feel sorry for these people. In the process of measuring, re-measuring and even more re-measuring they frequently cause pain. I can keep my mouth shut usually unless they hit a particularly sensitive area. Again, they’re so kind and sweet. The nurses apologize and I tell them not to…they can’t help it, they clearly are not trying to hurt me.
Once they’re done tormenting me, half the time a second nurse will have popped her head in to assist and then we chat. It’ a very team oriented place – I like that. Then my nurse will decide what kind of lidocaine to use either gel or liquid. They apply it liberally inside my wound and then cover me back up with the blanket and leave me alone for a bit. It takes about 10 minutes or so for the lidocaine to kick in. While I lay there, sometimes I close my eyes if I’m really tired and sometimes I juggle my phone and blackberry alternating between checking work e-mails and playing around on Facebook and Twitter.
After what seems like an eternity the PA or doctor (sometimes both) and nurse come in. More small talk and donning of purple hospital gloves. Then the real fun begins. Hands are stuck inside me. My wound is spread open, there’s poking with fingers, prodding of all the internal tissue. Moving stuff maybe? How to explain the way it feels…hmm. It’s not generally so much painful as it is extremely uncomfortable. Sometimes it’s extremely painful when they hit a particular spot but as I said, just mostly uncomfortable.
The real pain tends to come after they’re done and my muscles and parts are no longer being fondled…then the pain comes and it’s the weirdest, deepest pain you can imagine. Then after they’ve done whatever they need to do…by way of using metal tools to poke out miniscule pieces of foam, or scrape out suspect tissue that doesn’t look healthy…I am released back to the nurse. At that point about 2 feet of the grey foam is cut and shoved inside of me. Here lately since I’ve been healing inside, it’s been harder to get all the foam in that they need so more pressure.
ANYHOO so Tuesday as I drove to my appointment and thought about the poking, prodding, shoving, pushing, taping, patting, etc I felt sick. I did not want to do it and as I made the turn into the hospital complex parking lot, I was full of dread. I pulled up in front of the hospital and handed my keys to the valet and took the longest time to walk to the wound care clinic. And to make matters worse when I got there it turned out there was an emergency staff meeting so I had the pleasure of sitting there an extra half hour while they attended to the meeting. The longer I saw there, the more annoyed I became.
I had a good week with the vac. I changed the canister Monday after work, and then not again until Wednesday afternoon! This is fantastic…it is the longest I’ve gone…a full 48 hours. Then for whatever reason I had to change it Thursday at noon, so that was weird.
This morning I headed in, I was trying to keep a positive frame of mind knowing that I’d be meeting with the surgeon. After having the foam PAINFULLY removed…not sure why it hurt so badly but boy did it ever…the surgeon came in and examined me. Poked around, touched stuff. I swear I know I have a new hip but he did something. By the time I left there I had such deep pain in my new hip. Gah!
I begin Home Health on Monday, but then the surgeon said he would see if he could get authorization and he’d take me into the OR on Wednesday. Don’t think I’ve ever been so excited! Then he asked me a bunch of questions he’s already asked before…am I diabetic, do I smoke, etc. He asked about my labs and said he would only do it if my labs were good. Yikes. Not sure if he looked at them when he left, but he left for some reason and was gone for about 10 minutes. In the interim I was getting antsy because I remembered I had to go to the office for a meeting in the afternoon (normally I telework after my appointments).
When he returned he poked around a little more, he, the nurse and I made jokes about the soundtrack being played over the loudspeakers (theme from Superman!). There was a brief discussion between the three of us about Star Wars, Stark Trek and Game of Thrones and then I suddenly decided my surgeon was not quite the stiff I thought he was. And I decided to stop being so uptight and untrusting.
He will be gone the second week of September and told me he felt more comfortable being here and not leaving my post-surgical care to others even though ‘I know your care would be fantastic’. I appreciate he was concerned. At the end of the day he decided on September 18. He was really concerned about the quality of my hip skin because my skin is so rashed up and broken. Seriously, some days my skin just starts to break open and bleed…it’s pretty awful. And super itchy!
The good doctor decided to take me off the wound vac! I couldn’t believe it. I nearly levitated off the bed I felt so light and giddy. Seriously. He decided the vac wouldn’t do that much more in the next 2 weeks or so and it was more important to improve my skin quality as much as possible between now and the 18th so there’s minimal chance of infection and he has more good tissue to work with. I asked him to please keep in mind that I need to be stitched, stapled and superglued. And begged him to make it look as un-frankenstein like as possible. He looked at me sort of with a question in his eyes. Yea, as bad as it looks, there is little chance this is going to be one of those scars that eventually fades into the skin and is barely discernible. Oh well.
He re-iterated that I needed to take care of myself. Eat. EAT. Protein, protein drinks. Eat. Hydrate. Take care of me. That is now my sole goal for the 18 days. I am going to focus only on food and will not use exhaustion as an excuse not to eat. Seriously, I need this. I need him to sew me up. I’m desperate for it.
Oh and now for the bad news…bed rest. He made me promise that once released from the hospital I would lay down with as little movement as possible. He kept saying it in different ways but the message was the same: you are not to be moving that hip and leg.
What this means is I will need babysitting. I do not like that. I didn’t do well with being babysat after I was released either time from the hospital. I do not do well when I’m imposing on someone else’s time. Seriously…how the hell am I supposed to move as little as possible?
I know it’s going to hurt like a beast and I have a feeling the pain is going to last for a while. You don’t think the thigh/hip area is particularly sensitive but damn it is. I keep remembering the pain from my last surgical endeavors. Ugh. At least while I’m in the hospital I’ll have good drugs.
Oh and the other thing…I do not have the time to take off from work. I’ll need several days in the hospital and then somehow I need to convince my boss to let me telework for a solid week. I’m hoping after that I can go back to the office, that I’ll be healed up enough. As my bestie pointed out…at least having another pay period to wait til surgery I can accumulate more leave time. And now that I’m switched to home health, I’ll be able to use less leave time for my appointments. 30 minutes vice 2 hours.
Back to today…so…I was bandaged up with some kind of fancy dressing. The nurse and PA assured me they’d talk to Home Health so on Monday my bandages would be changed by a nurse with the proper dressings. In the interim, my nurse at the clinic packed a bag for me loaded up with the special dressing to go inside my wound along with the external pads covering, tape, and some other items. I almost interrupted her supply gathering to tell her I have plenty of ABD pads but the smart part of my brain said SHUT UP! Those things are expensive and I need several each dressing change. I’ll change my own dressing tomorrow and Sunday and then hopefully the Home Health people will be here at a reasonable time on Monday. We never did discuss scheduling…in fact that sort of annoyed the shit out of me when the Rep called from the Home Health agency.
And that’s my life now. All I am going to do for the next 18 days is eat, rest, and try to be calm, not stress out and take care of me. Easier said than done. I’ve been grinding my teeth so much the last few days that my jaw aches and my head hurts. It’s making me crazy. Need to figure out how to calm down and stop it…but nothing seems to work. I thought I broke a tooth yesterday from teeth grinding!
But…on the upside, I ate all my dinner…protein first. And it’s been so easy to walk around without Vlad. It’s quite delightful. Going to enjoy this weekend without being tethered to machinery. Maybe being without it will help my teeth grinding once my body relaxes some? Oh and wish me luck that I don’t drain all over the place…forgot that was the one big issue with not being on a wound vac…the potential to leak!