It has been a busy few weeks (seems like they all are these days)!
The stitches were removed from her incision and it has completely healed. I watched that like a hawk to ensure we didn't get any additional issues and that it closed as soon as possible. Her hair is growing fast and is very thick. Judi always wanted thicker hair - I'll remind her one day that she picked a difficult way to get there.
We have completed the IV antibiotics and now she is on an 8 week dose of oral antibiotics to make absolutely sure that there is no infection remaining. Getting the catheter (PIC) removed from her arm turned out to be quite the circus. I'll spare you the details, but we ultimately had to take her to Augusta Vascular Center to get it removed. It did not dawn on me at the time, but this is the center where many of Judi's co-workers from her Radiology Intervention days at University Hospital had gone to work. I understand that they had a good reunion and I am sure it was good medicine for Judi. I think it is always a little difficult for others to know if Judi truly recognizes them or not, but I believe that she does because I always see a change in her behavior after these types of encounters. Judi's awareness level is very keen, it is her input/output ability that she is struggling with. I continue to believe that one of these encounters will be what pulls Judi across the gap just out of the blue one day. I encourage you to come and visit when you can even if it is just a few minutes. I know that inside she probably feels a little isolated and those of you that know Judi also know that she loves to be in the middle of everything!
We have resumed neurofeedback (NF) training at home and we made our first trip back to NC last week. We have decided to limit the training to what I call the "stabilizing sites" for the next few weeks while Judi continues to regain her energy following the surgery. She is starting to engage more, but is still far from where she was before the surgery.
Judi is starting to hold her head up for longer periods of time. It is clear though that she does it when she wants to. When she wants to withdraw, she will drop her head and act like she is asleep. I can usually tell when she is "playing possum" or just plain tuckered out. We'll keep working here since it is so critical for her longer term well being.
Judi's swallowing has improved significantly and she is moving from pureed to courser ground foods. Thanx to Rebecca and Joel Cantrell for the awesome baked ziti and homemade cheesecake (both are on Judi's list of favorites). Judi enjoyed both a great deal (Jess and I too!). We are still struggling to get Judi to feed herself, but as long as she is eating well we can take our time here.
Rehab is going OK. We are still having issues with energy level and desire to engage/participate, but it is getting a little better each trip. She is standing again in the standing frame at rehab and at home as well. This is probably the most important physical activity for her since it engages so many muscles and holds the best potential for restoring use of her left leg long term. I am hoping that completion of the IV antibiotics will restore some of her energy.
Please continue to keep us in your prayers. Judi and I both are drawing heavily on the strength they bring us. I'll be straight up with all of you and let you know that I don't think I could make it without the strength that seems to come when I close my eyes and ask God to help me make it one more day. We suffered a setback with the infection, but after all we have been through this is just a bump in the road.
Steve
Friday, September 24, 2010
Sunday, September 5, 2010
Deja Vu
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
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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