Let It Go

Sorry for the long gap since the last post. We didn't have Internet for about a week while our house was torn apart to replace the hardwood floors (again) and then my faithful laptop began to slowly bite the bullet. The power supply overheats and randomly shuts down in the middle of activities. I am using Judi's laptop for now and have finally learned to navigate around Windows Vista (I know why everyone hates it now).

Judi is getting a little better in some areas and losing a little ground in others. I am firmly convinced she is desperately trying to tell me something. She is working so hard to get the words to come out and she is very close. Her awareness level continues to be very high, but she continues to struggle with the input/output aspect. I suspect it is driving her crazy inside that her body is not doing what she is working so hard to tell it to do.

Her memory of past events is clearly getting better. I gauge this by asking her questions when she is "tuned in." She is excited about hockey coming back to Augusta and wants to go to a game soon. I am also trying to get tickets for the Manheim Steamroller concert next month (she loved their Christmas tunes).

Judi's energy level has definitely decreased and her attention span has shortened significantly as well. I suspect that the missing bone flap combined with the long term antibiotic use are the key culprits here. We have another month of antibiotics to go and they won't consider the prosthetic surgery for at least six months after the antibiotics are finished. The weather (barometric pressure) really gives her head a fit as well.

Judi has essentially shut down when it comes to therapy. Again, I think the bone flap is a primary contributor here. That combined with the fact she has to wear the helmet while she is there has made that a negative experience for her. As I had feared, they are going to discharge her from therapy the middle of next month due to a lack of progress/participation. I am told that some people do better after a break from rehab and that perhaps after the prosthesis surgery is done she could benefit from further therapy. They also tactfully told me that people in her age group typically have recovered the majority of what they will recover by this time. I don't want anyone to take away from this that I am accepting this. Those of you that know me also know that I will NEVER give up as long as the good Lord gives me the tools to keep going. We'll pick up the therapy slack at home to the best of our ability and keep her strong in preparation for the next surgery.

Swallowing continues to get better and she is eating well. She still won't feed herself, but we'll keep nudging her along here. She has difficulty "initiating" most actions since the surgery. If you ask her a question, most of the time you have to lift her arm before she will respond with signs. This one has been extremely difficult for me to take because she was doing so well before the surgery. Since there were no issues in the surgery, I am expecting all of this to return once we have the prosthesis back in place.

The head continues to be my nemesis. Some days she will hold it up pretty well and others, she'll keep it down most of the day. This makes it very difficult to work with her on most activities (writing, item identification, etc.). As I said before, I can't restrain her head like I did before to help train her neck muscles due to the shape of the remaining bone in her head. I'll keep working hard here because the benefits are so great. If anyone has any ideas or experience here, I would appreciate the input.

We are continuing neuro feedback (NF) hot and heavy. She seems to respond well here and perhaps that will be the difference in success and failure in the long term. We continue to make our trips to NC at a reduced frequency due to the fact we are focusing on the stabilizing sites only. Once we start changing them, we'll increase the frequency of the trips.

I think that pretty well covers where we are today. Many of you know that I love music of all types and listen every time I get a chance. Judi used to get a kick out of the range of music I listened to. It is not uncommon for me to listen to Pink Floyd and Garth Brooks in the same sitting. I have become a huge fan of the Zac Brown band of late and often think his tunes are telling my life story. One of his recent tunes "Let It Go" hits very close to home these days. If you haven't heard it, give it a listen.



One portion of the refrain runs like this:

Save your strength for the things you can change.

Forget the ones you can't.

You gotta let 'em go.

I'll leave it up to you to apply those words to your own lives and would tell you that it is very good advice. I'll also admit that it is easier to say than to put in practice. I know that things happen for a reason and I learned long ago that I am not in control of where this journey will ultimately end. I also know that I made a vow 30 years ago to Judi and God that I would "love, honor, protect, cherish her in sickness and in health until death do us part." I mention it here because I still need your help and prayers to make it through this challenge. Judi loves to see old friends so don't hesitate to stop by if you have a chance even if it is only for a few minutes. I know in my heart that Judi is going to make a significant recovery beyond where she is today, but she won't be able to do it without our help.

Steve

Pickin' Up Speed

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

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

Home Again

Just a quick update for now. It has been a long week and I have to get some sleep.

Judi came home today and is doing very well. One of the samples taken under the bone flap did finally grow out a "bug." It took almost a week before it surfaced so we have spent the last couple of days determining the best course of action to ensure the infection is cleared up once and for all. An interesting item is that the overall belief of the team is that the infection was there when the bone flap was inserted last year and just took a while to surface.

She will be on IV antibiotics for the next four weeks followed by eight weeks of an oral antibiotic. The IV schedule is a killer. One of the doses is at 2AM and it takes about an hour to go in which will make for some long nights for the next month. Hopefully we can get on a twice a day schedule vs. the current three a day schedule once the levels stabilize. Thanx to my sister -in-law (Karin) for stepping up and helping me with the 10AM dose. There is some issue with business licenses that prevent Judi's caretaker from administering the antibiotic.

Judi seems to be at about the same place mentally as she was before the surgery. I was really worried about this since she showed significant losses following the last surgery that took a long time to recover. She has been very tired and hopefully that is just a result of the entire hospital stay and not a longer term problem. She has been cleared to go back to outpatient rehab and we'll just have to watch her head like a hawk. Her Dr. did make a decision not to have her wear a helmet due to a concern with some edges of the skull having the potential to damage the skin if it was repeatedly rubbed. We will have to be very very careful.

I'll provide more detail and some addition info when I have more time. Just wanted to let everyone know she was home and doing well. Thanx for all the thoughts and prayers - we surely need them.

Steve

Surgery Follow Up

Well, another one is in the books. Judi had surgery Wednesday afternoon and we had to remove the bone flap that was created during the craniotomy procedure last year. I can't describe how disappointed I am that we had to do this, but it is what it is and we'll move on.

When Judi's bone flap was re-inserted, there were three areas where some bone loss occurred. This is not uncommon. The most pronounced spot was just about in the top middle of her head and was about the size of a quarter. We had noticed that the skin in these areas pulled inward over time as opposed to growing across these areas which is what normally occurs. Her neurosurgeon could not explain why this was happening and had not seen it before (good old Wilkerson luck at work again). We had been watching these areas for quite some time to monitor for any indication of skin breakdown since this was essentially the only barrier between the outside world and the dura matter which surrounds the brain. The area on the top of her head was the culprit.

The surgery was very successful and it appears that we caught it right at the start. All of the dura matter was still intact and showed no signs of degradation or infection. Several samples were taken to determine what type of infection (if any) was present in the areas surrounding the brain. So far everything has been negative which is excellent news. This is not only important for the right side of her head, but also indicates that there is likely no infection that would get to her shunt (installed on the left side) which would require removal/replacement. The fact that there is also no indication of infection in her blood stream alleviates the concern over the hardware that is in her back becoming infected as well. If it gets infected, it could require removal/replacement as well. So if you wondered why this is such an emergency for Judi, this should give you a good picture of why.

The neurosurgeon did identify a very thick layer of scar tissue under her bone flap when he removed it. It is typical to have some, but this was much more than normal. Some of you may know that Judi's brain had never returned to the normal position on the right side after all of the surgeries were done. There is a possibility that this was the cause. So if there was any silver lining, this was probably it. The surgeon also identified what caused the skin to appear "pulled in" across these areas. For some reason, her skin adhered to the edges and cracks where the bone flap and existing skull mated up up. It was just a matter of time before the skin pulled apart in one of these areas.

Sooooo, where are we today. The bandage was changed this AM and the incision looked great. She is very tired and comes and goes pretty frequently from sleeping to awake. She is moving everything she moved before she had the surgery (very good news - last time it was a couple weeks before it came back). I also got her to smile and laugh today so I know she is getting better. I think the key difference for her this time is that her awareness level is VERY high. I can't say this any other way - this time she was VERY scared. I could see it in her eyes and I did everything I could think of to re-assure her (including not letting her know I was scared too). If no infection surfaces, she will be able to go home Mon/Tues time frame. She'll be able to go back to outpatient therapy, but will have to wear the dreaded helmet again. She'll get IV antibiotics for 4-6 weeks as a precaution and if all goes well, we'll be back in 3-6 months to have the prosthesis installed (yep, another surgery). Not sure yet how this will impact her ability to get neurofeedback therapy.

Thanx to everyone for the support and prayers as we have gone through this latest bump in the road. Judi had a lot of momentum going before this last surgery and I pray that she will be able to continue improving when we get her back home. We could sure use your prayers to keep the healing and recovery process moving in a positive direction. I'll try and do a better job of keeping the blog up to date, but time has become a difficult commodity to come by these days. I had been working on a new entry for a couple of weeks before all of this happened. I usually don't have time to sit down at the computer until the very last thing of the day and often wake up in the same place I started (must be gettin' old).

Steve

Hi all! Dad has been up to his ears in the business of day to day life, so I'm going to give you a quick update.

Mom was readmitted to the hospital Monday night over concerns about a spot on her head where the bone flap is recessed. There are signs of infection which is a cause for concern because it can infect the bone, as well as the membrane and tissue underneath.

She will undergo surgery (again!) this afternoon to fix this issue. There is a small chance that they will not have to do anything major, and a plastic surgeon will simply fill in the area. It's more likely, however, that the bone flap that was originally removed just after the accident and replaced last August will have to come out again and be discarded. After a period of healing, a prosthetic flap will be made and inserted.

We are frustrated and saddened. If the flap has to come out it means another big surgery, and she will have to be without it for about six months. This means she will need the helmet, and extra caution pretty much 24/7, as she will have a portion of her brain only protected by skin. We're not sure, but this will probably mean putting a stop to the neurofeedback for a while as well, which is frustrating because it seemed to be showing some improvement.

In any case, we are just trying to take it in stride. At the beginning, we were told there was a chance this would happen, and Wilkerson luck seems to be showing itself again! But we'll keep our fingers crossed and see this through.

We will update again later to let you know how everything went. Thanks as always for your care and concern.

Hot! Hot! Hot!

Seems like it went from cold to hot in a hurry this year. I have had to watch Judi's skin closely when we go outside for any length of time to ensure she doesn't get sunburned. She has always burned easy, but she is really pale after all the time inside over the last year.

I'll go ahead and admit that last week was one of the toughest I have had in a while. July 2 was our 30th wedding anniversary. Judi and I had planned to go to Alaska this year for a 2 week trip to celebrate. She has always wanted to go and I told her that we would just delay the trip until she was a bit stronger. She seemed to understand and I pray that I will be able to take her some day. I did take her to the Mall for the first time since the accident and she seemed to take it all in and enjoyed the environment. I also hooked her up with a Starbucks Iced Coffee which she thoroughly enjoyed. For supper she had Lobster Ravioli from Macaroni Grill and ricotta cheese cake (a couple of her favorites). After I got over the tears that night, I gave thanks to God for being able to share a wonderful day with the love of my life and prayed hard for those that are not as fortunate as I am.

We also celebrated Jessica's 27th birthday on the 4th of July. I can hardly believe that our "little girl" is all grown up and taking the world by storm. I don't know what I would have done without her help and support this year. I know this has been terribly difficult for her, but she has always stepped up to support me at every step along the way. I'm awfully proud to be called Jess' Dad!

Judi is holding her head up as a matter of routine now! She does her best to hold it up all of the time, but the muscles are just not strong enough yet. She is also looking around at the things going on around her and is absorbing it like a sponge. When we had to use a restraint to hold her head up, she was forced to focus on what was directly in front of her. Now she can easily look side to side and see what is going on around her. I also believe she is reading signs. I have asked her a lot of questions when we are out and about as well as driving and she is clearly comprehending pieces of the data.

Now that Judi is holding her head up, we are planning to put her in the full body harness and get her on the treadmill next week. The system will support her body weight while she starts to take steps. There is a fairly good chance that her natural instincts will kick in and and she will start to walk. It is obviously a LONG haul to get her strong enough then to carry her own body weight, but that is a winners problem from my perspective. I have also shifted our electrical stimulation efforts from her neck to the left arm/leg which should also aid in this effort.

We have started the NF training at home (YEAH) and she is doing great with it. We have to go back to NC every week until we are sure she is stable with he sites we are training on. They are open on Saturday until 11 AM, so we are currently planning to drive up at the crack of dawn on Saturday, do her therapy and then drive back. If Judi can tolerate it, this will be the best option for us overall. She won't miss any of her traditional therapy sessions (speech, occupational and physical) that run on a Mon-Fri schedule. I won't have to take time off from work (I still have a very difficult job and it is what is paying the bills). It is also a huge effort to pack up and take everything that is necessary for an overnight trip. If we need to though, we'll go up on Friday night to make the Saturday morning sessions.

Come and see her if you can. It is good medicine for her and possibly for you as well. Thanx Ang for the goodies that came with the visit, the entire Wilkerson family enjoyed them. I continue to look for things to expose her to that may stimulate her memories, so if any of you have ideas don't hesitate to let me know. Please continue to keep us in your prayers. I am more convinced than ever that Judi can make a full recovery if we continue to be in her corner and help her along the way.

God bless,
Steve