Mind, Body and Spirit
Updates on all...
First, the BODY.
- I got the wound vac off yesterday. This is a major improvement in the convenience department. The wound vac (which was on my right leg) had a battery life of two hours and otherwise required being close to an electricity source. We had to manage various appointments to ensure we could get plugged back in in time. Plus the cords and heavy contraption had to be gingerly managed to ensure they weren't stepped on, layed on, ran over by the wheelchair, etc. So needless to say I was excited yesterday during my wound change at the doc they removed the vac! (I will get reunited with this amazing -albeit clunky - technology for 5 days post skin-graft surgery).
- My skin graft surgery will most likely be the second week of September. Will hopefully be the last wound surgery.
- I walked to the couch and back yesterday (~20') and did so twice today! This was accomplished with my special walker and some supervision from my PT on one side and Aaron on the other. Not only did I go twice as far today, they both agreed it was a much prettier version than yesterday :). It is painful on my leg (especially the calf), but I know it will continue to get easier. I'm already strategizing on the places I shall go around the house here soon. I've never been so excited at the thought of getting my own glass of water or making it to the bathroom where we give our kids a bath. Exciting stuff. :)
- I got two new splints on my right arm this week. One was put on just yesterday, the other today. Yesterday the computer systems were down at the hospital and clinic so the hand expert team couldn't get the nuanced information they wanted from my hand surgery medical records from Springfield. In the absence of that info, they played it on the safe side completely restricting my fingers in a claustrophobic, 90-degree angle, sock-puppet-esque position. Needless to say I called back when the computers were up and they had consulted with Springfield to get the latest info vs waiting until next week's visit. They all agreed my fingers could be less constricted as long as my wrist and thumb positions were held in place. So we made a visit to the hand team today to release the sock puppet forever and partially free up the fingers. Felt like Friday-night freedom.
- The left leg has had a fairly uneventful week as it's really in wound healing mode. The goal there is to heal as soon as possible, get stitches removed and start working on my prostheses fitting. We don't have a clear timeline yet as its all dependent on how fast my leg heals, but the start of the prostheses process could be just weeks away. My doctor is letting both legs heal at their own pace, in parallel, versus dictating some sequence. We will see which one becomes the "lead leg" in my rehab process. Feel free to wager a guess. :)
- This week has included ongoing phantom sensations in the left leg. I call them sensations vs pains as they don't really hurt just feel strange. This week has consisted of the same sensation that will come and go. It essentially feels like someone is applying heavy pressure / pushing on the bottom of my foot in the middle section between the toes and heel. It literally feels like the foot is still there. It can trick the mind for a split second. I heard something interesting about phantom pain/sensation this week that I hadn't heard before. A Physician's Assistant at my doctor's office said the sensation will continue to move up my leg. For instance I will feel the phantom feelings in my heel next, then by my ankle, then in my calf, etc. I'm not sure this is the case for everyone, but I will find out if this is how it plays out for me. It makes me wonder if my first phantom feelings were in my toes and I just don't recall based on everything else that was happening the last three weeks. I have also heard it could take a year or two or even more for these feelings to subside. Basically your nerves and your brain have to fully absorb new information, new patterns, new signals. The body is an amazing thing.
- Being at home has helped ease my mind tremendously. First and foremost it's allowed us to get back into a regular routine with the kids, with our family. They get up in the morning and hang out with me for a bit and we play/snuggle/get ready for the day. Then Grandma loads them in her "school bus" (aka SUV) to take them to daycare/preschool. They each have a ticket and earn a sticker each ride. Five stickers earns a prize. This routine replaces our old routine of me driving them to school, with the added fanfare from Grandma. (though they are probably getting rusty on their name that tune abilities without my playlists :). Aaron then picks them up per our regular routine in the afternoon and then we hang out all evening. We have become quite creative on activities they can do in my twin bed in the living room. I've played Crazy Eights with Mitchell about 42 times this week, successfully painted Morgan's finger and toe nails with my left hand, have read many books, peeled off countless stickers, watched some cartoons which I had never actually paid much attention to before, etc. Aaron tends to play with one of them outside while I play with one inside. We eat dinner together at the table. Aaron put in a leaf that better accommodates wheelchair clearance. The kids like to wheel me over for dinner (and I brace myself with my hands to ward off any accidental leg crashes! :). Then Aaron gives baths and we get the bedtime routine going. All in all this is about as close to our normal routine as possible. Sure beats hospital visits at all different times, meals wherever and late bedtimes after driving back. The hardest part for me is not being able to put the kids to bed. I miss that. The other night Morgan woke up in the middle of the night with a bloody nose crying. I'm lying right below her in the living room and can't go help her. So I holler to Aaron and he of course takes care of it-and does a fabulous job-I just wanted to be able to do it. Aaron and I will both be happy when I can make it up the stairs again :).
- We are managing other mind parts of the journey as well. I should be getting med school credit hours as I learn and commit to memory all of my treatment protocols, med details, etc. I like to ensure I know what is supposed to be done to me. Aaron is paperwork king as usual, managing the seemingly endless stack of forms and phone calls.
- We still have much to learn about prosthetics and physical therapy exercises and probably something else. We need to decide which useless (?) information is going to need to purge from our brains to allow room. Maybe Nebraska high school sport stats or Duck Dynasty quotes for Aaron? I'm trying desperately to hold on to my deep bank of knowledge surrounding the 1985 World Series. We'll keep you posted.
- Overall I feel our spirits are very strong. We have our moments. For instance we were going through our pictures to choose a few for the Caring Bridge site and were looking at the hundreds of photos from our recent trip to Florida. There were many with me in a swimsuit or in shorts. It was strange looking at those pictures of my perfectly healthy legs without taking a moment of pause. Another of those moments occurred when we left the house for the first time and had to go through all of the steps of him wheeling me out, loading my wheelchair, etc. It was a little surreal to us both that he was loading a wheelchair for me. There is also a great story about the two of us having to go into a women's public restroom together. Someone had to wheel me in! Let's just say we were thankful no one else was in there when we jokingly yelled "cleaning crew" as we hovered at the door. Another favorite is when Aaron sits down to eat breakfast and eventually looks over at me remembering someone does indeed need to provide food for me. :) Canceled plans is also something we are getting used to right now. Our usual Labor Day weekend plans aren't happening this year.
- With all of that said (humor included), I truly feel like we've been able to stay positive. First of all we both know this is all temporary (God willing!) and there's only upside from here. Plus, I continue to strongly believe I am meant to be on this journey. I don't fully understand why yet/what's to come, but I do believe this is my path. This belief gives me strength and makes it not only possibly but often easy to remain positive.
- I've also learned that there is a lot of truth to the notion of actively choosing your attitude when something like this happens. Several of you have mentioned this in posts and cards and I'm really understanding what you mean as I live it day to day. For instance, if we start having a discussion that is too negative for too long, I know I need to move off of it and actively get back to thinking of the positive.
- Lastly, many of you have truly touched my spirit through your words. I received a card the other day that is a good example. This person talked about something truly tragic that had happened to his son. He then went on to say how they supported and challenged their son to discover how the unexpected event could improve his life and the lives of others' - even people they didn't know. He closed the card by telling me how this approach to life made all the difference in his son's life. He then asked me if I was up to that kind of challenge. It was an amazing card to receive. I love the notion of turning all of this into something good.
I will close as usual because I simply can't say it enough. Thank you, thank you, thank you for your support Your prayers. The prayer requests you are making on my behalf. Your cards. Your messages here on Caring Bridge. Your acts of generosity via the care calendar site and all the unexpected gestures that roll in each day. You guys are teaching me so much...more to come on that thought in a future post.
Please keep praying for continued progress in healing and rehab of my body and for Aaron and I to continue to remain strong in mind and spirit. Thank you!!
Enjoy the long weekend!