Judi continues to fight her way back, but the recovery is very different for her this time. Her awareness level has become one of the key factors in her ability to bounce back. Right now, it is working against her I think. Most of you know that Judi was a Neuro ICU nurse for many years and clearly understands how serious her current condition is. She is struggling in many areas and it appears that at least part of it is due to her unwillingness/inability to engage in the difficult tasks. I am sure that the fact she knows she has another surgery looming in the near future is fueling this. Please don't interpret this as a criticism of Judi, just a reality that any of us would have to deal with in her situation. I read a book that was written by a neurologist that had a severe stroke and ultimately recovered (took eight years). Her description of her mental state describes exactly where I think Judi is today. She was keenly aware of everything around her, but couldn't communicate with those around her. Her frustration level drove her to do many things that impacted her recovery (positive and negative). I can only imagine what is going through my girl's head today.
She has reverted back to letting her head hang down most of the time. She does hold it up periodically, but for short periods of time. As you know, this was a battle that took us almost a year to win before this last surgery. It has once again become my key focus area. It was such a positive impact for her the last time and hopefully it will be again.
She is having a great deal of difficulty with swallowing again as well. This one really worries me because it is more than likely an artifact of the surgery and not something she is currently controlling. She was just starting to transition to food that she had to chew with her teeth before the surgery, now we are struggling with pureed foods. I'll keep working with her and hopefully this will recover as well. It takes a great deal of patience to work through this and I'll admit I am having to dig deep to find the energy to do this again with the knowledge that we will most likely have to do it again after the next surgery.
We went back to rehab therapy for the first time since the surgery on Friday. It didn't go very well. Judi just didn't engage in any of the sessions. I am unsure how much of this is due to the hospital stay, the antibiotics that continue or the missing bone flap. Hopefully it is predominately the first two and she will get back in the groove soon. They were already talking about the potential to discontinue therapy while she recovers further from the surgery. I got them to agree that we needed at least a month before making that type of decision. This would allow her to recover from the surgery and get off the IV antibiotics before deciding. If it is indeed due to the missing bone flap, it won't change a lot if it follows her previous history. Once again, we had just got her up in the "walking machine" the Monday I had to take her to the emergency room. I can't tell you how many hours went into getting her to that point.
We are working with her therapist for neuro feedback (NF) training to see what we can do with her bone flap missing. I am praying that this will be her "ace in the hole" for this recovery. I have already seen a tremendous impact of the therapy and hopefully (I have used that word a lot) it can help her deal with the situation and come out on top.
I know this entry seems to be overly negative, but it is what it is. I try to keep perspective and realize that it could have been a lot worse. Cognitively, she is where she was before the surgery and that is a huge success. She did not lose any muscle function as a result of this surgery. She has healed well and seems to be getting stronger day by day. She still likes to dance in her wheel chair (I take her hand and we whirl around the room). She still smiles when I kiss her and tell her how much I love her. She still melts my heart when she reaches up and gives me a hug. She always seems to know when I need one and helps me find the energy to keep on going. Rest assured that I am more committed than ever to doing whatever it takes to get Judi the best recovery she can get. The challenge will just be different this time. I have never walked away from a challenge in my life and I'll do everything I can not to let Judi down. As they say, I ain't heard no fat lady singing and if I do, I'll just stuff something in her mouth!
I feel like I need to revisit a topic I mentioned a long time ago in a blog entry and many of you have heard me talk about it since then. Please take time to stop and "smell the roses." You just never know how long you have with those you love and care for. A good friend and co-worker lost his wife this week after a tough battle with cancer. His name is Charles Lampley and he loved his wife Rhonda with all his heart. A couple months ago, we had a long talk about all the challenges that God had placed in front of us in the previous year and this topic came up near the end of our talk. Please take a moment to keep Charles and his family in your prayers as they face this difficult time and take stock of what is truly important in your lives as well. It just might surprise you that what you "thought" was important and what is "truly" important are very different and you didn't know it.
Thanx as always for the thoughts and prayers. Feel free to come and see Judi when you can. The visits always do her good and challenge her to find those memories that are tucked away inside.
Steve
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steve thank you for all the updates on judi. I know it takes time away from you busy schedule with work and careing for judi. I look forward to reading the updates and keep up with them always. you and judi are always in my prayers and will continue to be. your friend Deborah Turner
ReplyDeleteSteve,
ReplyDeleteThank you for your honest updates on Judi. I think about you & Judi often. Your love for her is amazing. You are both lucky to have each other. You are both in my prayers. Keep going Judi. I know you can do it!!
Love,
Heather (AOA)
Steve, Judi and Jessica....
ReplyDeleteAll of you are continuously in my prayers!
I pray for strength as you face new challenges each day.
Thanks for the continued updates. You and Jessica are amazing people, Judi is so fortunate to have you both. I think of Judi often. Tell her Deanna said hi, I'm living in Belgium (my husband is active Army) and should be back in the states for a visit some time soon. My daughter Jade is making me a grandma. I'm sure Judi will get a chuckle out of this, we used to have great talks (while working together in Specials at UH) about Jessica and Jade as they were both Seminole fans. Keep up the great work.
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