Tough Days

I apologize for the long gap between posts, but between moving, work and trying to get Judi stable, my cup runneth over in a large way.

Yes, we did finally move into the condo.  We are still dealing with lots of stuff in boxes, but for the most part we have settled in.  Judi seems to like the new digs and it is a lot easier on me (just having the washer and dryer on the ground floor is a huge plus).  Several people helped an awful lot and I worked my brother, his wife and Jessica hard.  A special thanx to Kim Cassara who spent practically her entire Memorial Day weekend getting all the cabinets organized.  Everyone that visits seems to like the place and it is slowly, but surely starting to become home.  The condo is off Augusta West Parkway (behind the ice rink) and if you are interested, the address is:

1207 Brookstone Way
Augusta, GA 30909

I'll do my best to stay up beat, but Judi is not doing well.  Up until a couple of weeks ago, she was doing pretty well (excluding "evil Judi") and I had hoped she was going to make it without "tanking" like she has done in the past when the bone flap was removed.  Unfortunately, she has gone downhill fast and much worse than previous times.  She is practically unable to swallow and is no longer able to eat real food and can only manage a few sips of water from a spoon before giving up.  I have had to shift her back to tube feeding to get her nutrition and fluids.  Her head stays down 95% of the time and she shows very little interest in anything around her.  She also has periodic episodes where she just loses control of her body and shakes, kicks her chair, grabs her PEG tube, etc.  It is like she is totally out of control and in a highly agitated state.  I have had her scanned to make sure nothing has changed physically in her head and everything is as expected based on her surgery.  She can't (or won't) assist in transferring any more and I essentially have to pick her up to move her.  We can't do this for long (her caretaker is already struggling) because it will take a toll on her body (and likely mine) to pick her up repeatedly.  It won't be long before we are back to a lift to be able to move her safely.  She thrashes around at night and continuously make sounds, so I am back in the recliner trying to sleep again.  I never really get much sleep since I always seem to have one eye or ear focused on her.  This is the same woman that just a couple of months ago was advancing rapidly.  She was eating on her own and we were discussing moving to foods that she would have to chew significantly to eat.  She loved to watch TV and laughed at even the subtlest of humor.  She was interacting well with others around her and we were considering getting her a powered chair because she was doing so well.  I am very afraid she will get deeply depressed and give up totally.  Judi is a very strong woman, but you have to focus that strength in the right direction.  If she is working against you, that strength can make life very difficult.

We went to the Shepherd Center in Atlanta Friday to see her brain injury specialist.  We are going to try a few things, but we both agreed that we need to get something back in her head ASAP (prosthesis, bone graft, ??).  My search for the right plastic surgeon continues and so far I haven't had much luck.  We are scheduled to meet with the plastic surgeon that supports Shepherd (Arthur Simon) and I hope he can give me the insight I am looking for or turn me on to someone that can.  I am also trying to get some info from a couple of other facilities that come highly recommended in the area of plastic surgery.  I had hoped that I could have her surgery done at MCG with a different plastic surgeon than before, but I don't think that is going to be possible.  Her neurosurgeon is concerned about the doctor to doctor relationship since Dr Ritter (MCG plastic surgeon) did the surgery with him last time.  I don't like the way Dr Ritter treated Judi when we went back with the prosthesis issue and it was his work that had to be removed.  Why would I have him do it again?  I'll admit it ticks me off that it is the doctor relationship that is more important than doing what the patient/family wants.  MCG talks a big line about "patient centered care," but it seems Judi's needs come second in this case.  Soooo, we will likely be going to University, or out of town to have her next surgery done.

She is back in therapy at the pool and she still enjoys it a great deal.  I can't say enough about that program.  They have gone out of their way to help Judi get back in the groove and she is doing well.  She continues to get more and more movement of her left leg in the water.  I think she also enjoys the "chick time" with the team that works with her.  We also have a sign language specialist/special education teacher working with Judi.  Unfortunately she was just getting started when Judi started going down hill.  Hopefully we can get Judi back on track soon and take advantage of this effort.  She suffered a head injury when she was in high school and relates extremely well with Judi.  She is a special lady and I have a good feeling about her.  I think she is another one of those special people God has brought into our lives for a reason.

I think that brings us up to date.  I wish I had some better news, but it is what it is.  I am struggling to stay positive and I can't describe how devastated I am over this.  I have never been this tired physically, mentally or emotionally.  I had hoped back in April that all of the surgeries were behind us and we were ready to begin a new journey, but we are starting all over again for all practical purposes.  I know that God has a purpose in all of this and I continue to cling to the simple statement that "God does not make mistakes."

I would once again remind all of you out there to take advantage of the time you have today because tomorrow is not guaranteed.  Please keep us in your prayers.

Steve

Getting Stronger

Judi continues to prove what a fighter she is. In general, her attitude is very good and she is getting stronger every day. Her appetite is extremely good and she is starting to put a little weight back on. Cognitively, she does not appear to be losing any ground. When we had to remove her bone flap in 2009, she regressed rapidly. A month after that surgery she was essentially non-responsive and showed little cognitive function. Historically, people who show this response after one surgery show it in subsequent surgeries as well. Each recovery also traditionally restores less function than the previous one. We are not out of the woods yet, but so far we are heading in the right direction.

She has developed some new and challenging behaviors. I have started calling her "Sybil" because she acts like she has multiple personalities. She clearly understands the meaning and laughs when I call her that. She has one that we have named "evil Judi" and the name fits perfectly. Again, she fully understands when she is in this mode as well. If you are around her long, you will get the opportunity to see that behavior. It is very common for "bad" behaviors to surface with injuries like Judi's. I only pray that she doesn't get 16 personalities like Sybil had!! When I come home from work, she is usually sitting in her recliner where she can see me come up the side walk through the storm door. I always wave at her and blow her a kiss when we make eye contact. If she waves back and blows me a kiss as well, I know that "sweet Judi" is on the other side and it will likely be a good evening.

I did get her approved to restart her pool therapy. This will be very good for her physically and mentally. She really enjoys the pool and the girls that work with her treat her very special. They came over when I took her in for the evaluation and she was just beaming. As soon as I get her PIC line removed, she should be good to go. She is back to standing in her stander at home on a routine basis and is doing well. I am trying to get her some additional physical therapy, but that is a challenge with her head in its current condition. The rehab facilities won't let her in without a helmet (too many opportunities for an injury) and her neurosurgeon won't let her wear a helmet due to the possibility of rubbing the incision over existing bone. Hopefully I can get something set up for in home. We are starting her neuro feedback up again (if she will let me) as well. She had a short seizure out of no where last week and hopefully the NF will help get her stable

We are essentially ready to make the move to the condo. All we have left to move is Judi's bed and a few other essentials to be able to make the transition. I am going to let things settle down a bit before making the move. I have a lot of pokers in the fire as a result of this last surgery and as usual, Jess is a huge help. We are still searching for the right plastic surgeon, but so far no luck. We have a half dozen Dr's appointments over the next few weeks as well. We have another week of IV antibiotics and then we go to oral for 4 weeks.


I think that pretty much covers where we are. As things firm up, I'll keep you posted. Thanx to everyone for the prayers. I greatly appreciate the help that many of you have given me over the last few weeks. I don't know what I would have done without it. We are working out some bugs with the Facebook page, but hope to have it running soon.


Steve

It's Just Too Soon to Tell

A lot of you have been asking how Judi is doing.  It's just too soon for me to tell.  There are a lot of differences this time, but Judi was in a much different mental condition this time as well.  She has been sleeping a lot and her energy level is still very low.  The weather has been up and down as well, so it could be the culprit.  She is eating reasonably well, but her appetite is still off the norm for her.  I am giving her some additional food supplements through her PEG to help get her energy up and maintain her nutrition.  So, I am going to hold off on any judgements of the impact of surgery until we have a little longer to get her bearings.

I talked to the doctors on Friday and nothing has grown out of the cultures taken inside of her head.  That was great news.  We have passed the point where the traditional "do-bads" grow out.  They are going to keep them and monitor for an extended period of time to see if something shows up later.  Although it will be a long while before we can go back and repair Judi's head, we are already working on the options.  I want to get some other opinions before we commit to a path.  This is really a plastic surgery issue and there seems to be limited experience in the area with what we are facing.  I have to believe that with all of the terrible injuries our troops have sustained, there is a procedure that would work well for Judi.  If any of you have a plastic surgeon connection, we could use your help.  I am trying to figure out how to find that specialist.  Searching on the internet does not have the granularity to find the right one and I suspect that success will be when someone in that field has heard of someone working miracles in this area.

We are getting the facebook page up and running.  For those that are facebook challenged (like me), the blog will be updated as well after we make the transition.  I can't thank all of you enough for the numerous cards and well wishes for Judi.  Your thoughts and prayers are priceless to us and have more power than you can imagine.  Without them, I know that I would not have the strength to go on.  I have to give a special thanx to Mike and Tracy Borders (mainly Tracy) for the awesome vittles they brought by this weekend and a belated birthday cake for Judi as well (which she has thoroughly enjoyed).  I continue to be humbled by the kindness and compassion so many of you have shown us.

Thank you again,
Steve & Judi

Home Again

Just a quick note.

Judi is back home and trying to catch up on some rest. We will be doing IV antibiotics for the next 4 weeks and then to oral for another four weeks or so. I'll do a full update over the weekend, but wanted everyone to know.

Steve

Happy Birthday Judi!

Today is Judi's birthday and this was certainly not where we planned to celebrate #53. We had planned to be in our new "digs" and make her first beach trip this week for her big day.

We have decided to delay celebrating her birthday until we get her home and stronger. I wish I aged as well as she has. She's like a fine wine that only gets better with age!!

HAPPY BIRTHDAY baby!!

Surgery Update

Just a quick update.

Judi is back from surgery and the surgeons indicated everything went fine. They did find a suspect area on the prosthesis that may have been some infection. They took cultures and we will have to see what, if anything, grows out. This will determine the antibiotic treatment she will receive when she leaves the hospital. It also means we will be in the hospital for another week or so as we wait on the cultures and get her ready if she needs to take IV antibiotics.

Now we wait and see how she does mentally as she comes out of the anesthesia and gets her bearings. I will also have to get her to accept the fact that once again she has an abnormal appearance and not get self conscious about it. We will also have to make sure she recognizes the risk she has there and to treat it with care (no scratching, rubbing, etc.).

Keep praying for her. This journey is just beginning.

Steve

I Can't Believe It Is Happening Again

Happy Easter everyone!

I was holding off on my next post until we reached the one year anniversary since Judi's last surgery. That date was April 5. Unfortunately, our world has been turned upside down again and I had to put Judi back into the hospital on April 4. So what I had planned as an upbeat picture of where we were heading in the coming years, is going to be the start of yet another road block on the road to Judi's recovery. I will do my best not to become negative, but I would be untruthful if I said I was anything but devastated by the recent turn of events. I have actually written and re-written this blog entry a couple of times since I started it on Easter Sunday. You'll see what I mean a little later.

Last week I noticed that the appearance of Judi's incision had started to change. It appeared that it was being "sucked in" to her head. The incision has changed appearance in the past, but each time it raises my sensitivity level to monitor for additional changes. I also noticed a significant change in her behavior. There were a lot of weather changes occurring during this time and changes in barometric pressure often impact people's behavior that have undergone surgeries similar to Judi. Both of these are also warning signs that something could be changing in her head (a shunt problem being one of them), so I was on the alert. I spoke with her neurosurgeon on Monday and he arranged for her to get a CT scan the first thing Tuesday to see what was going on.

As soon as the neurosurgeon saw the CT scan, I was called to get Judi to the hospital and admitted right away. The CT did not show any issues with the shunt or infections, but did identify some air between the outer layer of the skin and the prosthesis that is currently in her head. This was very bad news. The presence of air indicates one of two things: 1)a large infection exists somewhere, or 2)a breach exists in her head that is allowing fluid to leak out and air to leak in. They immediately started her on several IV antibiotics as a precaution while we worked to figure out what was going on. Infections that are large enough to create these air pockets are usually very visible on a CT and the patients are usually very sick. Based on this and the negative results from all of the infection tests/scans, we don't believe this is the issue. The general concensus is that with the degrading state of the incision, it is most likely breached and is allowing some fuid to drain and air to enter the cavity left behind.

So why is air bad? The air itself is not the problem. The problem is that if air has entered her system through a breach, bacteria has as well. The bacteria can result in an infection if not dealt with. I won't go into a discussion on what could happen if infection gets into her brain, but it would be a very bad thing. The antibiotics will hopefully kill any bacteria that it reaches, which brings us to the complication. The prosthesis is not living tissue so there is no blood circulating through it or around it in some areas. Since the blood flow is what gets the antibiotics to the bacteria, there is a high probability that bacteria could have contaminated the prosthesis from the leak and the antibiotics will be ineffective in killing it.

The plan was to treat her with antibiotics through the weekend and take her to surgery early the following week and remove the prosthesis. I can only describe this as a heart breaking turn of events for us. Many of you remember what happened to Judi when we had to remove the bone flap back in 2010 due to the infection that developed under the flap. Judi degraded quickly and after about 2 months she had regressed to essentially the same level as when I first brought her home. When we installed the prosthesis in April of last year, she started gaining ground almost immediately. A large number of people in Judi's condition exhibit this response. They don't know why, only that it is a real condition and of course Wilkerson luck would put Judi in that category. Judi has never recovered to the same level that she had reached when we had to remove the bone flap. Unfortunately, this often occurs as well and in all likelihood (from a medical stand point) she will not recover as much when her head is repaired the next time.

We had come to grips with what we had to do and then all of a sudden the incision started to heal. The options started to change then and I thought all of our prayers had been answered. We had actually developed a plan to discharge her to a wound management group and I had convinced them to include hyperbaric oxygen therapy as well. I was starting to think we might be OK. I won't go into all the details, but the night before we were going to discharge her, the incision started to degrade in a different area. My heart sank when I saw it. You could actually see the plastic prosthesis through the incision. A subsequent CT scan showed that even more air had entered her head indicating that there was still a breach. This eliminated any possibility of leaving the prosthesis in. The risk is just too high that an infection will occur.

So here we are (Friday the 13th), waiting for her to go to surgery. She was scheduled for yesterday, but emergency cases and higher priority cases pushed her off the schedule. This is one of the bad things about MCG, but I try to remember we did the same to someone when Judi was brought in almost three years ago. I'll keep everyone up to date as we work through this. The standard protocol is 2-3 months of antibiotics (depends on cultures) and a period of 6-12 months before going back in. We obviously have to do something different the next time. She has had problems twice now with things that are not living (bone flap and prosthesis). There is a graft that is done that takes rib bones and tissue to build her a living structure and is closed by a muscle flap that is also connected to a blood supply. This is a BIG surgery, but something like this will most likely be the next option. I will be taking her to some plastic surgery specialty centers to understand what options there are. With all the work being done with our returning troops, there may be some more options that are less invasive for Judi. I obviously want to get some other opinions anyway to make sure she is getting the best possible opportunity to recover. If she starts to lose ground like she did last time, I'll work with them on what the right schedule is forger "total" health and well being.

We had planned to make our final move to the condo over the long Easter weekend, but we spent it here instead. I am not sure when we will do it now. We will have to see how Judi does and adjust as necessary. I had planned to take Judi on her first beach trip since her injury this weekend for her birthday (April 15), but we'll just wait a little longer. We are still going to try and get to Facebook to make it a little easier to get out some quick updates. I'll make sure everyone knows when we are getting close. Please keep Judi in your prayers. We need every one of them. A special thanx to my SRR co-workers that have been lifting us up in prayer. I continue to be humbled and amazed at the support we have received. Those prayers will be what lets her come back against the medical odds I mentioned above. I never could get my computer to connect using the MCG system, so I had to use my IPad to make the entry. There are several limitations(no spell check for one) using this as an input device instead of a computer. Hopefully I didn't make too many mistakes.

Steve