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

Roller Coaster

Holy cow! I didn't realize it had been nearly a month since the last post. That probably is an indicator of the pace at which our lives are going these days. Lots of new news.

Judi is finally starting to hold her head up. It is still for brief periods, but the more she holds it up, the stronger she gets. We have focused a lot of energy here using multiple therapies. This will significantly improve Judi's quality of life.

A couple weeks ago Judi made another significant cognitive step. Jess was working with her on her marker board and asked her to write her name. Judi promptly did just that. Jess came running in to tell me. We then drew a picture of a cat and asked Judi what it was, she quickly wrote the word "cat!" I almost fell out. The next day at therapy we wrote several words on index cards and had Judi identify the object that we had written down; she got them all right. This tells us a LOT of things: she can read, she can process the information and she can convert it into actions (all are cognitive skills). What a gal!!!! I keep telling everyone she is in there just trying to get out.

We can hold a reasonable conversation using her "yes/no" signals. We are also teaching her some basic sign language (she does her name, Jess', mine, when she is hungry, etc.). These are all huge steps for her. It still takes a lot out of her, but we know that she is capable.

Neuro-feedback (NF) is clearly helping in all of these areas, but it is only a piece of the effort. I have spent almost two weeks of the last month in NC getting NF training for her. Last Tuesday was one of the best days I have had in a very long time. She was animated, smiling, laughing, signing to us with confidence and I had a chance to see the fire that Judi always had come to the surface. She also wolfed down two huge pieces of quiche for supper that night (one of her faves). Unfortunately, Wednesday morning was one of the worst days I have had in a long time. Judi had a series of seizures that morning and I ultimately had to take her to the hospital in an ambulance. Needless to say, I was crushed. The local hospital there did a great job and performed all the appropriate testing (a couple needed a little prodding, but as you all know, when it comes to Judi I don't take chances). She did have a urinary tract infection and that was probably the key culprit for lowering the seizure sensitivity level. Her seizure med level was also on the low end since it occurred just before she would get her morning dose. This is also one of the things you have to watch with NF as the brain becomes more aware and active. She recovered fine, but it was a big setback for us. We know that Judi has a lot of recovery left in her (I am still holding out for a full one) based on what we have seen. I am going up next week for additional training and we will be doing some of the foundation training at home after that. They have a home unit that they rent out once we have identified the correct training frequency. We know we have that now. So I will be doing the foundation training at home (I haven't figured out how to fit that in yet) and then taking her once a week or so to train in the problem areas where it needs a professional to monitor.

We are also trying to get her medications sorted out to the appropriate levels. As her brain "wakes up" due to NF and some of the supplements we are giving her, she can actually become over medicated by taking the medicines she has been taking for a while. This has been a real balancing act for me. As you can imagine, doctors don't want to depart from the accepted treatment plan due to the liability that comes along with that. It usually boils down to me accepting the risk after understanding all the issues associated with each of the paths. I have faith that God will show me the way (he has so far) and I refuse to let Judi miss the opportunity to recover because we stayed within the traditional guidelines.

Judi's original caregiver is also returning to work for us tomorrow (YEAH!!!). Her sister is much better and she wanted to return. We were able to get her replacement another position as well. This is a huge relief for me and I am sure Judi will be happy to see her again.

PLEASE keep praying for us. Come and see her if you have a chance. Let me know if there are things going on that might spark that return to us and I'll get her there. One of the things that often happens about this time in the recovery of a brain injured patient is acceptance that what you have is what you are going to get. Judi has already shown us that she is a fighter and we have to be in her corner to help her along the way. Don't forget her. I am telling all of you that she can still make a full recovery, but she can't do it alone.

Thanx for all the help so far!
Steve

Never, Never, Never Give Up!

Winston Churchill sure had it right. Some of you may have noticed that Jessica, Judi and I are wearing silver necklaces with a round pendant on them. The pendant has these words engraved on it and we use it as a reminder on those tough days. A lot has transpired since my last post so I will try and update everyone to where we are today. Now that school has ended for the year, I will try and have the real writer in the family (Jess) update the blog more frequently.

We have jumped into the world of neurofeedback (NF) with both feet. The quantitative EEG (QEEG) provided a lot of insight into the current state of Judi's brain. I could go into a lot of technical discussion here (I have become much more knowledgeable of the brain than I ever wanted to be), but here are the basic facts: 1) the right side of her brain showed abnormal power levels at low frequencies, 2) above the low frequencies, ALL sections of her brain showed normal power and 3) there were a significant number of connectivity issues between the right and left side of her brain. The key take away is that all sections of her brain are functional (evidenced by normal power above low frequencies). This would indicate that Judi is a great candidate for NF to correct/improve the issues she has. We have made significant progress in modifying her brain waves at the low frequencies, but have not seen any significant changes physically yet. I could list a bunch of little things that have changed, but we are looking for some major changes soon. The logistics of getting her to the EEG Centre are taking a toll on us. It is about a three hour drive one way to get her there and we are working hard to get her to the point where we can do the training at home. We need to make sure we have the training protocol "dialed in" before we do that. Remember that we are impacting her brain waves by this training and if you can do good, you can also do harm.

Physical therapy continues to go well and Judi is getting stronger every day. The most critical issue is still her neck and her ability to hold her head up on her on. We are performing electrical stimulation on her neck muscles and her left side arm/leg at home. Although it consumes a considerable amount of our home time, it is clearly having a positive impact. Once we have the neck issue corrected, we will be ready to get her on the treadmill (supported obviously) and start working on walking.

Speech continues to show very slow improvement. She is very vocal in her sleep and is obviously trying to put words together. I am positive that it is just a matter of time. NF could help this issue as well.

Her cognition continues to improve. She is VERY aware of what is going on around her and understands even subtle issues. I am sure she is struggling to come back to us and I am sure knowing Judi the way I do, she is very frustrated as well. Again, this is a primary focus of the NF program.

We are in the process of recovering from the loss of the caregiver that has been with us since Judi came home from the hospital. Due to the need to care for a family member, she had to resign from her position. This was a huge setback for me. She did an awesome job and I trusted her to care for Judi with the same tenacity and compassion as I do. We have found a replacement that I believe will do an equally good job, but it will take several months to bring her to the point that Judi gets the same care/therapy she had been receiving. I am currently gapping that effort as she comes up to speed.

I think that is all the big stuff for now. Please continue to remember us in your prayers. I encourage you to come and see her if you are so inclined. She enjoys visitors and I am sure that it means more to her than any of us realize to see friendly faces and revisit memories associated with them. I am also sure she is glad to see/hear someone other than me.

Steve

One Year Later

Have you ever completed a questionnaire that asked you the following question?

“Where do you see yourself in five years?”

What a ridiculous question! With all the uncontrollable factors at play in our lives, the whims and fancies that change our directions every minute of every day, who could possibly give an answer to that question? I can certainly tell you that five years ago, or a year and a month ago, I could not have even come close to predicting where I am now.

One year ago, our lives were changed forever. A split second saw the end of a chapter in our lives and began a new one whose ending we could not even begin to guess. In the space of an hour on April 26, 2009, I went from worrying about finding a job for the new school year to wondering if someone was about to walk out of the trauma unit doors and begin a conversation with “I’m very sorry.”

At that moment, and in the days that followed, the thought of ‘a year from now’ did not even begin to enter my mind. As those early days passed, we thought in days, and weeks. We wanted to see IV drips stopped in so many days, or tubes pulled in this many weeks. A year was so far away that surely all of this would be finished by then.

But this has turned into a longer chapter than we had originally imagined. At the beginning, we could not even imagine how long it would take, and how slow the progress would be.Each day we look for the signs that Mom continues to get better. Some days it’s easy to be optimistic, and some days that glass is just half empty. But by little steps and inches, she gets better.

In some ways, it’s like what I imagine having a baby must be like. (Hear me out on this one.) You look for milestones – that first laugh, the first smile, the first words. In a way, Mom has been reborn. She is learning to do everything again. The first time she laughed, it was cause for celebration. Now she laughs and smiles with us every day. The first time she was able to do “Yes/No” responses, it was cause for celebration. Now she can answer questions to help make sure she gets what she needs at any given time. Everyone who sees her from the medical perspective sees phenomenal progress and improvement. We are always looking forward, pushing her gently but surely toward toward another step.

This is not the story we wanted to live, but one year ago we learned that sometimes life just doesn’t go according to plan. But we have come so far in one year; where will we be one year from now?