Roller Coaster

Before getting to the post, I thought you might like to see the gorgeous lady I am married to. As you can see, she is still smiling and sporting her new "round head!" You'll have to forgive my poor skills at inserting and sizing photos into the blog.

It looks like we have finally ignited that "spark" back in our gal. I think it took a broad range of items from different sources to get her excited again. She finally started holding her head up again and received positive feedback from every person around her. She was constantly hit with "you look great" or "they did a great job" or something along these lines. I rolled her in front of the big mirror at the barber shop and she scoped out her new look from every angle. She had her appointment with her rehab Dr and we were successful in getting her back into outpatient rehab in all three areas (physical, occupational and speech)!!!! She received multiple complements from the staff there as well. She also had an appointment with her urologist and the nurses and Drs alike had nothing but positive feedback for her. It is worth mentioning that she held her head up for essentially all of these interactions (this is better than she had done in the past). She also started to hold her head up most of the time while riding in the van and began to take active interest in the sights around her. I reminded her of where we were and why we used to go there in the past and she seemed to take it all in. I think the biggest push to get her back on track was when I took her to the first outpatient therapy session for her evaluation. You would have thought she was a hero returning from the great war. Everyone called to her and welcomed her back. They all came over and told her how great she looked and how excited they were to have her back. You could almost see the "glow" begin as she realized that she could indeed do this. When we sat her on the mat to see how her core strength was doing, she held her head high for the entire time (she has never done that before). She also did a great job with all the exercises and the therapists were impressed. She is also starting to interact more and has resumed reaching out with her right arm/hand. While that sounds like a small thing, it is a huge step. One key task she has resumed is giving me big hugs and holding my shoulder when I transfer her back and forth. She is also helping during transfers by pushing up hard with her right leg as she moves through the standing position. So lots of good news there.

Unfortunately, we have hit another bump in the road. Last Thursday she had a series of seizures that ultimately put here in respiratory distress and required us to take her to the hospital in an ambulance. These seizures were different than the ones she has had in the past and she just wasn't able to stop them. I was talking to her on the phone from work and most of the time I can get her to pop out of it. Her caretaker indicated she was listening to me and fighting hard, but couldn't quite make it back. We ultimately had to intervene with medication designed to stop the seizures (thank goodness we had planned for this potential scenario). As I was talking the caretaker through managing the seizures, Judi started having difficulty breathing and at that point it became an emergency. I was also worried that her heart rate may be getting sky high as well based on previous experience with these. The EMTs put her on oxygen and by the time they got to her the medication was already starting to take effect and stop the seizures. Her heart rate was not dangerously high and her blood pressure was OK. I met them at the hospital and my wonderful day at the ER began. I could write a novel about that day, but I'll give you the Reader's Digest version. The main goal was to determine what caused the seizures to occur. Typically this is due to an infection or fever of some sort that lowers the threshold for seizures for people that are otherwise controlled (assuming medication levels are correct and hers were). All of these culprits were ruled out. We were obviously concerned about the possibility that something had happened inside her head as well especially since she had gone through the recent surgery to insert the prosthesis. The initial read of the CT scan by the radiologist was reported as a severe bleed in the right side of her head and the neurosurgery group was immediately called in. Judi's surgeon was not there that day. As you can imagine, my world went black with this news and it took everything I had to hold on while the neurosurgeons went over the scan. To my relief, the neurosurgeons determined that the abnormality was most likely thickening of material around the surgical area and not an active bleed. They were also successful in getting her surgeon on the phone and he concurred with that evaluation (he was evidently near a computer where he could review the scan). In actuality, Judi's brain has moved significantly towards the normal position and the air gap has decreased significantly. All in all, the CT scan turned into nothing but good news. After the determination that there was nothing surgical to be concerned with, the onslaught on neurologists began. They looked at every possibility and could not find a smoking gun. The main concern was the number of seizures she had simultaneously without an apparent initiator. I asked them if it was possible that it was just her brain "waking up" and becoming more active and I got the answer I always get from these guys "It is possible, everyone is different." We did raise her medication level to put her higher in the normal range just as insurance. She seems to tolerate this medicine well and it doesn't zonk her out so it should not be a problem. We left that evening and she seems to be doing fine. I told her that we didn't find anything and that the most likely cause was an increase in brain activity. I am not going to let her get frustrated at this point in the game while she is finally gaining some ground.

That was a lot of words, but several of you called me checking on Judi since I left from work pretty abruptly. A few other things of note. Judi's rehab Dr is leaving Walton Rehab and going to Shepherd in Atlanta. It is my intent to have him continue to follow her recovery and this will also allow me to get access to the resources there from a different angle. As many of you know, I have been planning to get Judi evaluated there and at the Kessler Institute (New Jersey) once she got stronger and was recovering well. Both are top rated facilities. Perhaps this is just another one of those doors that God has opened to keep Judi on the path to recovery. And I guess lastly, Judi's caretaker called and told me they had to admit her husband to the hospital and she would not be available to work Monday. And with true Wilkerson luck, her backup was not available. That left me with the option of using someone that had not worked with Judi, or stay home and care for her myself. I am guessing you figured I won't be at work tomorrow. I am training two additional caretakers in the event she has to be out for several days.

One last thing. Several of you were asking me about the prosthesis that was installed in Judi's skull. The picture to the right is the model that they made of Judi's head using the CT scan and computer imaging. The blue piece is the model of the prosthesis that was generated to match her head. As you can see, there was a significant portion of Judi's skull removed (about a third). The dark lines are where the piece fell out (rubber band broke) and I had to glue it back together. It is a single piece and it fits perfect in Judi's head and then is screwed into place to keep it stable. The plastic material is porous and the bone will ultimately grow into the prosthesis and make it even stronger.

Well, I am spent. Hope this brings everyone up to speed. She is doing fine and I believe she is going to step up once more and let that Judi spirit drive her. Please keep praying for us and stop by and see her if you get the chance.

Steve

Hold 'em Close!

Happy Mother's Day to all the Moms out there. We often take for granted what an impact our Moms have on who we turn out to be. I know that my Mom struggled a great deal to make ends meet as a young divorced mother, but what I remember most was that she was always there for me and always had my back. I encourage each of you to reach out to your Mom if she is still with us and let her know just how special she is and how much you love her. Give her a big hug if you can and spend some time with her. You never know what tomorrow will bring, so why wait? If she has already passed on to God's side, say a little prayer for her and be sure to thank her for all the hard work she did in making you the man or woman you are today and for all the wonderful memories you shared together.

Happy Mother's Day Mom! I know you read the blog and I wanted everyone that reads it to know just how much I love you and thanx as always for being there when I have a tough day. To Judi's Mom who left us way too early in life, I know you are watching over her from heaven and I thank you so much for making her the woman she is today. Those of you that knew Judi's Mom (Shirley) also know Judi is just like her. Both are wonderful women.

Steve

Two Years Have Come and Gone

April 26 marked the end of the second year since Judi's accident and it was difficult for me to believe that we had just got Judi's skull repaired. When we started this journey, I would never in a million years have thought we would still be going through brain surgeries two years later. In some ways, it seems like yesterday when our world came crashing down and life took on a very different meaning to us. In other ways, it seems like our previous life is a very distant past and life as we know it today is normal for us. I guess that's how we adapt to these types of situations if you are going to survive them. Or said in my terms, you can let this thing slowly destroy you and live in the past and the "Why us??" mode, or you can suck it up, move on and live life the best you can.

I will admit that I am still in the middle of the two. I had clearly started to transition to the "move on" mode last summer before we had to go back for the surgery to remove Judi's bone flap. She was doing well and the future was starting to firm up a bit for us. As I watched her steadily lose ground after the surgery, I had to fight to "stay in the middle" again. As I watch her today, I keep looking for that spark that she clearly had during the summer, but it has not surfaced yet. I don't talk about Judi's specific condition a lot because it often confuses folks that have not been exposed to this type of situation. Just so everyone will have an idea of where we are today, Judi was more responsive and capable of performing tasks when I brought her home from Walton Rehab Hospital for the first time in Sept, 2009 than she is today. I know that is tough to hear, so I am sure you understand how tough it is for me to say. HOWEVER, I do believe Judi has the capacity to do it again and make a significant recovery well beyond where she has already been. The reality is, she is going to have to make up her mind to do it before she is going to start getting better. So far, she has not made that commitment and my focus has been to try and get her motivated in that direction. It is difficult to know what tools to use to get her going though since she really doesn't provide any feedback on whether it is having a positive or negative impact. She has an appointment with her Rehab Doctor next week and my mission is to try and get him to put her back in outpatient rehab. I think that will do her a tremendous amount of good physically and the social interaction with others that are working through similar issues may be the catalyst to get her going again. Judi is pretty competitive by nature and has never been afraid to step up to a challenge in the past. I suspect it is going to be difficult to get her back in unless she interacts some with him during the appointment. As you recall, she was discharged in the fall due to a lack of participation. keep your fingers crossed and pray that Judi steps up.

On a different note. Judi's hair is growing in well. The incision is healed and there are no issues there. We went to a an appointment with her GYN doctor and all was well. I can assure you that was a unique experience for me. I was the only man in a room of women and felt like an "onion in a tulip patch." They were awesome to us though and I could not have asked for better care for Judi. I have a new respect for women though. There is nothing fun about the mammogram process and it made me hurt just watching. Saving the ta-ta's comes with a price. We have also restarted her NF therapy and she seems to be tolerating that well.

I know the post has been a bit gloomy, but several folks have asked me over the last couple days how Judi was doing and I felt like I needed to be candid with those that care for her. DO NOT read into this anywhere that I am giving up on her. I will keep at it as long as God gives me the strength or she tells me to leave her alone. Keep praying for us. Jess and I are doing our best to support one another as well as Judi, but we are both getting a little worn down. Stop by and see her if you can. She does like visits and if you catch her on a good day, it will warm your heart a bit. I will try and include some pictures of Judi with the next post. Now that she is back to normal, I don't think she would mind having her mugshot on the air waves.

Thanx as always for your support and prayers,
Steve