Walking Spirit

I completely forgot today was Wednesday. When you spend as much time sitting around the house as I have during the month of May it's easy to lose track of the days. Anyway, I can report that there's been much less pain this week. I'm barely even using the narcotics (pain killers) anymore.

I'll see the doctor tomorrow morning and the wound looks healed enough that they will probably take most of the stitches out. There is one spot that continues to drain fluid during the night but it's improved dramatically over the past week. After I see the doctor tomorrow I should have a clearer picture of how soon I can be fit for a new prosthesis and how quickly I can get up and walk again!

The legs have been staring at me from the closet for 3 weeks now and it's getting both eerie and tiresome. The doors had to be taken off of my closet so that I could get in there with my wheelchair. This has three major drawbacks. The first and foremost is that my legs are always in sight and sometimes, because my suits are hung behind them, it looks like I'm standing in there looking back at myself (spooky huh?). The second problem is that the closet doors were full length mirrors so I can't really see all of myself when I stand up. The third, and biggest concern of all is that there's nothing to keep the monster in the closet at night. Although, it's possible that my legs, under the direction of my doppleganger self, have been keeping the monster in the closet because there have been no attacks!

Point being, I'm ready to walk again and it's gonna be soon. And this time, the left leg is gonna feel great and I'll be walking more than wheeling around in my wheelchair. They may even become so normal that I can put the doors back on the closet. After all, my legs will be out with me so I've gotta find a way to keep the monster under control!

Well, enough of that, I'll let you know what the Doctor says tomorrow.

Sorry it's taken so long. 3+ cups of bone, and then two weeks later, a cup and a half of puss (yuck) coming out of my body has left me feeling a little uncommunicative. The pain was bad and, honestly, it got a little hard to see the point of continuing the fight. With the help of friends (both old and new) and family I'm finally feeling better about things and the light on the other side of the horizon seems reachable again.

While I was out of touch Renee, my Physical Therapist, attended a class in Chicago that covered a lot of info about Bilateral AK (Above Knee) Amputees. She called me on her way back with a message of hope. She'd seen three people, with the same challenges that I now face, walking unassisted. Now, they've been walking a lot longer than I have but the point is that I can get there. That freedom will one day be mine.

It's hard to sit here on my bed and look at the pair of legs and crutches that are collecting dust. But I know that in a few weeks, when the pain is completely gone, I'll be back up and dealing with a different kind of pain. The kind that Renee inflicts on me during our therapy sessions.

This is all I've got in me for now. An old friend will be here in a few minutes with dinner so I can't keep rambling the way I usually do. I haven't forgotten where I left off with the improvements on the house and I promise I'll finish eventually. For now though, just know that I'm feeling better and my spirits are up. Thanks again for all your support!

Jeremy got to come home this evening. The doctors were able to figure out the infections and to determine an appropriate course of treatment. He has a nasty staph infection-the kind that doesn't respond to penicillin or any of it's derivatives and another infection with a long name that neither Jeremy or my mom were able to remember. He is home with IV antibiotics. He will have a visiting nurse come twice a day for 6 weeks to administer the medication-eventually some of us might get trained so that we can do it for him but agreeing to a visiting nurse was the quickest way to get him home. I will let him fill you in on the gory details when he is ready. I am off to put a VERY sleepy girl to bed-oh yeah, Madeline's heading to bed too! :)

Jeremy is actually feeling a little better today! To feel better the day after surgery gives me an indication of how bad he must have been feeling before the surgery. Not much has changed since last night. We are waiting on results from the cultures. When those come in they should be able to find the right antibiotic to fight this infection. It sounds to me like he will have to be on IV antibiotics and he is not thrilled by this news. Anyway, the doctor said that it would be at least the weekend before he could go home. I will share your comments with him-I know they help him to feel better. I'll share more information with you as soon as I have some. :)

Jeremy called me at school this morning from Wishard Hospital. He had gone for an ortho clinc to have his stitches removed and ended up being admitted and facing surgery this evening because the infection in his leg was worse. The doctors indicated that this was a "serious" issue.

So, at this point, Jeremy has already been in surgery and hopefully is returning to his room about now to rest for the evening. The doctor told Mom and Dad that he must have been in tremendous pain. There was a great deal of infection. They have cleaned it out well and the bone and tissue look healthy. A drain has been put in to assist with further removal of infection. They are going to culture the "gunk" they scraped out to determine the source of the infection. Until those results are in they will put him on a broad spectrum antibiotic (sound familiar?). Infectious disease doctors are also on the case to determine if there is an antibiotic that he can take orally-if not he will have IV antibiotics for 4-6 weeks. Fortunately, this can be done on an outpatient basis.

The doctor told them that just from cleaning out the infected area his leg is already a third of the size that it was when he went into surgery. This gives an indication of how swollen his leg was from the infection. She is optimistic that he will feel much better very soon and should return home in a couple of days. I certainly hope so.

I'll update you as things change. Thanks for keeping Jeremy in your prayers.

So, Thursday morning I woke up covered in sweat, my skin was grey, and my hands were so wrinkled I looked like I'd been laying in a tub of water for hours. Needless to say, this didn't leave me feeling very good. I had a therapy appointment that afternoon and Renee was not pleased with the condition of my skin. (redness near the incision, the wrinkles had gone away)
She contacted the ortho clinic and they squeezed me in.

There are five potential signs of infection - edema (swelling), pain, redness, fever, and discharge. I've got four out of the five. The one I don't have is the discharge. The problem is that the radiation treatment could also be responsible for the other four. To be on the safe side we're treating an infection. I'm now on eight different medications and have to get up frequently throughout the night to keep the pain under control. I think we're finally making some progress and hopefully the stitches will come out on Tuesday. I haven't forgotten where I left off on the facelift of the house. I will get back to it soon but I thought you all might want to know that overall I'm doing better, I'm still not out of the pain woods yet but, hopefully I soon will be. Thanks for all the positive thoughts and prayers!

Hey guys! Jeremy is still feeling really yucky. I think-no, I KNOW- that he needs some positive thoughts to lift his spirits. If you're out there and reading this please leave him a note-I know it will help!

Love you Jeremy!!!

Sarah

Hey-it's actually Sarah posting under Jeremy's log in. I'm sitting on his bedroom floor. He asked me to let you know that after a visit to therapy and to the ortho clinic he is just too exhausted to continue his story. He is still in a great deal of pain and just feels pretty crappy overall. There is a possibility that his leg is infected so he's going to start some antibiotics and hopefully will feel better in 24-48 hours. We'll keep you posted.

It's been a slow week. Most of my time has been spent laying in bed trying to move my leg as little as possible. Pain management has been an issue all week. I'm taking Percocet, which is really strong stuff but, I think the stuff that sent me on the cruise while I was in the hospital was so strong that Percocet is like Tylenol for me. Which is just nuts because this stuff is so addictive that it's illegal to prescribe refills or call a prescription for Percocet in!

So, since it's been a slow week, I figured I'd tell you more about being home. I continue to be amazed by the kindness and support of the community around me. My house is only one story so we new from the start that it would be the easiest place for me to get around. The problems were that there were steps to get in and out of the house at all entrances, the entire house was carpeted (since I'm on wheels, most of the time, that was just difficult), and the bathroom had all sorts of issues (stained carpet, leaky shower stall, ugly medicine cabinet, etc...).

So some folks from church and my parents neighborhood (and my Dad) built a ramp in my garage so that I could get in and out without going out in the weather. Then a family friend, Kevin Clark, donated his time off to remodel the bathroom. He and his Son spent most of their weekends at my house installing a ceramic tile floor and shower, tearing out a cabinet so I can wheel under the sink, installing new shower fixtures that meet ADA requirements and look really cool, and installing a new toilet (with a really cool seat). My Dad helped him install two angled and mirrored medicine cabinets in the corners of the vanity which gives off kind of a wrap around mirror effect. (cool huh?) Our friend Paula, who is a Designer, painted the bathroom for us and Dad did the finishing touches with new towel rings and a robe hook. Oh, and my old friend Mark, who lives in Minnesota, came to visit and installed a new vent fan/light while he was here.


I was about to talk about the painting and wood flooring that went on in the rest of the house but my pain level is starting to increase so I think I'll continue tomorrow. Check back for the rest of the story!

The surgery did indeed go well. Dr. Stewart is extremely talented! It left me in quite a bit of pain but getting to return to the Burn Unit was worth it. I was quickly re-united with Angie, one of the Nurses who initially treated me after the accident. She made me feel right at home and, with the help of a morphine pump, the pain went away. Another nurse who watched over me in the past, Lindsey, made a special trip up from the ER to stick me with an IV.

The morning Nurses, Megan and Dennis, seemed happy to see me and I enjoyed watching the looks of surprise as other staff came by. Renee checked on me in the morning before going to work with her other patients and filled me in on what she new about the radiation treatment scheduled for later that day. The purpose of the radiation was to help prevent the extra bone from reforming. Shortly after Renee went to torture her first patient of the day one of the doctors from the Orthopedist's team came by to fill me in on the plan.

Some EMT's were supposed to pick me up between 9 and 9:30am to take me in an ambulance to IU Med (literally across the street) for a 10:30 appointment with Radiology that should last about 30 min. At 10:00am Megan got a call from the Radiology department and they told her she had to arrange transportation. This was absolutely not Megan's responsibility but she made it happen, and the EMT's came to get me on very short notice.

My Father and I took a quick trip in an ambulance across the street and then sat in a waiting room for a long time. It was nice to have the time to hang out with Dad but it would have been better if my morphine pump had not run out about 15 minutes after we arrived. Had it only been a 30 minute procedure this wouldn't have been a problem but, what was supposed to take 30 minutes actually took 6 hours! The Radiology staff gave me an occasional morphine injection to help fight the pain. It was too infrequent, and because I wasn't in control of it, my pain level increased from a 4 to a 6 on a 10 point scale. One being the best and 10 being the worst.

When I got back to the Burn Unit around 4:30 pm the nursing team immediately went to work on getting my pain back under control. Around 5:30 pm Renee came by to watch me prove my independence by transferring from the bed to the wheelchair. She let me off the hook when she saw my pain and then tried her best to lift my spirits. Mom and my friend Jamie joined her in this endeavor and, while they did lift my spirits, my pain level remained about a five.

A while later Rebecca (the Nurse who took care of me most nights when I was most critical) and Angie (the Nurse Rebecca took me from) increased my dosage of morphine and helped me get my pain down to a 2. The night went well from that point on and, for the most part, I slept peacefully. Oh, and during the time that my pain was at a six there was also a catheter incident but those details are to grusome to go into here!

This morning Renee and April (the Tech. who spoils me) snuck me a chocolate doughnut and coffee and I got to visit with some other familiar faces. Like Tony, the Nurse who helped me get ready to leave today, Janet Crawford, the Case Manager who helped guide my family and I through the procedures of Wishard, Karen, one of the PT's in the Burn Unit that helped get me ready for the ARC, and of course Dr. Sood.

The Ortho Doctors came up around 11:00 and changed the dressings on my wounds and removed the hema-vac (sp?) drain from my leg and released me. Five minutes later I was back in my own clothes and disconnected from the IV! It's amazing how much better I felt. I got to spend the next hour relaxing before Mom could get there and departed the Burn Unit in much better condition than last time. Now I'm home again, with some new pain medication, and with any luck will be walking more regularly in a couple of weeks!

Did I mention that last Friday the PT's (Pretty Torturesses - ie. Renee and Sarah) came to my house for therapy and showed me that I could get into the backyard? They even helped me get in my hammock! Getting out was not pretty but going through a couple of days of pain and inconvenience is worth it if I can spend more time in the yard!

Well, after a long day of waiting and surgery and more waiting Jeremy is resting back at the burn center tonight-he was given a room there after his surgery because there were rooms available and he is a former patient. I guess they kind of liked him there so they were glad to have him return. Surgery was supposed to be at 12:30 but the surgical team didn't actually wheel Jeremy back until around 2:30. Then there was more waiting.

Around 6:45 Dr. Stewart came out to talk with Mom and Dad. She explained that she had decided to do her other surgeries first because she wanted to be available to spend some time talking to Jeremy and answering his questions when he awakened. (Hmm...Jeremy ask questions??? How odd...) :)

She told them that she had "peeled" away an extraordinary amount of bone from Jeremy's leg (around 3 cups worth). She was impressed with the fact that Jeremy had been able to get up on prosthetics at all because of the amount of pain that should have caused. Good for Jeremy for persevering!

Dr. Stewart mentioned that Jeremy would probably think that she had taken more inches off of the length of his leg. That's not the case. The entire femur is still there but it looks much smaller due to the amount of excess bone that was taken away. The beauty of this is that when they went to close up there was extra skin-and they don't want extra skin because they need a good tight and smooth surface to fit the prosthesis. So, they had to remove some. They were able to remove the entire graft area from the burn injury! All his skin is his own healthy skin!! Dr. Stewart mentioned that because they were able to remove the rest of the burned area this type of problem is unlikely to develop again. I should also mention that in addition to bone peeling, (doesn't that sound awful? I keep envisioning a potato peeler.), the doctor removed the screws from Jeremy's femur. The bone has healed nicely.

Overall, surgery was a huge success. Mom and Dad report that he is uncomfortable this evening but glad that surgery is over. He will have radiation treatment tomorrow and the doctor has suggested that he remain in the hospital until Wednesday just to give him more time to rest. We'll see what he thinks about that! Dr. Stewart felt that the incision should be healed within two weeks give or take and then he can get up and running (or rather, walking) again. Dr. Stewart and everyone else who knows Jeremy-and I'm beginning to think that's just about everybody-are very complementary about him. They enjoy working with him and feel that he is an inspiration to all. I wholeheartedly agree.

Jeremy should be back with you on Wednesday-I know you will miss him if he's unable to do it. However, if he's not able to do it I will give a follow up on his post-op progress. Take care.

Sarah