Fiercely Independent Pam

Tag: rehab

  • One Cow Valve Coming Right Up!

    It has definitely been some time since I added a blog post. Creative juices are struggling and honestly I am not sure what to “report.” I know I have a lot to digest- there were many struggles to having this all take place. I have been telling everyone that open heart surgery wasn’t on the bingo card for the year. Honestly, I am not sure how all of this transpired to be here for the year. I am struggling with the idea that if something is going to go wrong, it will with me. The chances of having a central line infection are always going to be there. The actual event of having a central line infection hits differently. You feel like you have been chosen for something you must have done wrong. Missed wiping a cap or cleaning the line 6 seconds instead of a full 10. Maybe it was missing a dose of meds or…

    Several “strikes” came out against me as well.Once I got transfer orders, it still took several days to get to my destination and plan for surgery. then surgery got canceled due to situations beyond anyone’s control. The second surgery attempt was canceled due to a bad UTI bug, and then finally the third attempt was successful.

    The final surgery was so successful that I barely spent anytime in the ICU, which I guess ended up being a good thing, but it created a lot of unnecessary stress. Looking back, that was so far ago. It was scary and more than anything very stressful. I am happy to be part of the decision making again. It’s very hard for me to give up my independence as well as my ability to be an active member in my care.

    I have been saying there are two points that, when followed, will help everyone be on the same page and lessen stress and anxiety. The first is to simply tell me what someone is going to do, BEFORE it is done. small things like adjusting the bed or removing tape can seem to come out of left field, to take 3 seconds and explain what is going to happen goes a long way and reduces stress. The second is to be aware of other things going on, such as my leg wound or similar. There really should be no reason why the leg wound is touched or bumped into if the provider is aware that the problem is present.

    That’s the ugly part. It takes away from the pretty and special part. I am blessed to have nurses and techs that’s want to make my stay wonderful. These are the ones who go out of the way to give a real bath with soap and water and not just some cold wipes that itch. They are the individuals who sneak through the cafeteria to swipe some jelly because, honestly gluten free toast isn’t very good without some flavor. I respect these individuals so much, I am aware that I am less than a picnic in the park but I really value these folks that meet me half way and acknowledge how much I contend with.

    The bottom line is spending almost a month in a situation that no-one wants to be in is taxing. My bed is calling my name and it will appreciate my new found strength to move around it freely again. Processing the surgery itself is going to take some time. I honestly wasn’t ready for the depth and life- changing part. It wasn’t until I saw my incision that the impact hit me. I don’t want to play the game, about other people and similar surgeries, since all of us have had a unique path to get to where we are headed. I am happy with what needed to get done and how it got done. I’ve been routinely told to trust the team and trust the process. I found this harder to do than deal with the pain and annoyingness of the surgery itself.

    Today, this adventure continued. I moved to intense rehab, where I receive at least 3 hours of rehab each day. Evaluations in all areas were conducted today and I was challenged to stay awake through all of them! We started the morning cleaning up at the sink and tomorrow will be another SHOWER day, which means I will be exhausted afterwards. I demonstrated my strengths and weakness as they relate to getting dressed and setting myself up for success for the day. I would be a liar, if I didn’t say it felt pretty good to see myself in the mirror while brushing my teeth or fixing my hair. It also felt wonderful to wear real clothes and not a hospital gown.

    As I continue to progress in therapy, (my biggest hurdle at this point is endurance, I look forward to meeting goals of returning to pre-surgical status, but also reinventing my “normal’ to be a little harder and a little more protective of what I once was able to do! Please continue to pray for me and my success in this endeavor!

  • Independence at Last, Well, Sort Of.

    I am truly enjoying my independence to be able to stand and even walk some. I am growing more confident and have given up the transfer board completely at this point. I even have been experimenting with the toilet and standing long enough to undress and not lose my balance.

    I need to keep in mind that I still have a lot of work to do. Balance is a major concern, as is standing tolerance. I am still super wobbly when standing and usually have to hold on to something to keep my balance.

    Without completely oversharing, I am also going to begin the transition out of disposable briefs and into reusable “leak proof” underwear. I am trying a brand call “Everdries” and will hopefully meet my needs and be a whole lot more comfortable, than disposable briefs.

    My last major task is being able to get in and out of a car. I want to practice this before I need to use this skill to get to MUSC. I have a couple of weeks so I am thinking there will definitely be enough time and it might even be a “non-issue” if I get strong enough by then. PT has also offered to help me achieve this goal.

    As far as the Zeen goes, I set the goal that I will complete the 1/4 mile loop around my building by Easter. I think I am going to go outside today with the Zeen and see how I do on the sidewalk. I am excited to meet this goal.

    I also want to get back to using the NuStep, even though I am using the Zeen, I think adding the Nustep back in will be a great plan. I have to figure out how I am going to transfer to the NuStep as well as getting up from it because it is kinda low.

    Rehab is still my first priority in all things right now. I still need to grow stronger, gain better balance, and be able to get up from lower seats. I truly appreciate all of your good thoughts and prayers to make this happen for me.

  • The Hard Work Begins Today: A First Day of Inpatient Rehab!

    So it begins.. I arrived at inpatient rehab yesterday after a few delays mostly because of the weather (crazy snow storm!) I ended up paying for transportation and it was a good decision since I am still having problems standing up and transferring.

    I was beyond welcomed by the staff here for rehab and they have been wonderful! I am confident that I forgot a few things, but hopefully I can have some help from my family. I am super excited to start working hard- I will receive at least 3 hours of pt/ot each day, which is exactly what I need. Right now I am finishing my Bible in a Year Podcast, which is nice to be able to stay up on.

    I am looking forward to unpacking my stuff and setting up for rehab, as I packed up pretty decently including lots of pants and t-shirts, but missing catheters and a watch charger! All in good time! For my first night I am wearing my special Buckee’s pjs that I picked up when I was there for my interview. It was a fun nod to what I have accomplished already.

    I think I have said this before, but wanted to update people about the progress of the service dog. In addition to the service dog, I am continuing with rehab. The next steps is to have a site visit here at my apartment and they will also be bringing a dog to help me demonstrate some skills, hopefully at the grocery store. This should be taking place after the committee meets- around late March/ Early April. I am thankful that they are willing to come here. From there, the next steps would be to be accepted as a formal client and begin fundraising for team training and similar. Then begins the “Fun” part!- Something special PAALS calls “Speed Dating” where we make sure the right connection is made between a dog and the “handler.” Eventually, team training will take place, but this is a far way off. All of this is super exciting!

    In the meantime, I will be working hard at standing and completing rehab goals. I am not sure exactly what it means to finish my antibiotics and future doctor’s appointments, but I moved as many appointments as possible. Time to track down what I am missing!