Good To Go

We had Judi's first follow up appointment on Monday and all was well. She got all the stitches out (she was happy about that since they had started to itch). The incision has closed nicely and is almost completely healed. There is no indication of infection internally or with the incision so hopefully we have that behind us. That was probably the biggest risk post surgery. Judi's brain is still pushed towards the back of her head on the right side and will probably take several months to move back into it's normal position. There is an air pocket still in her skull where the new prosthesis was installed and it has not filled with fluid. This could take a very long time to be eliminated for Judi due to the shunt that she has. To keep it simple, without the shunt, the fluid would build up in Judi's skull and compress the air bubble which would ultimately cause it to be absorbed by her body and go away. The shunt creates a pressure relief device and as the air bubble compresses, the pressure inside her skull increases as well which causes the shunt to open and relieve the fluid to her abdominal cavity. We will just have to wait and see if the fluid is able to reach adequate pressure for the air to absorb or not. The problem with the air bubble is that it does not provide the same shock absorber type effect as the fluid does and makes Judi more susceptible to further injury from even minor bumps of her head.

We DO NOT want to do anything with the shunt unless things really turn bad for her. The main reason being the infection risk every time we go into her head. If she got an infection, the prosthesis would have to come out and we would have to start the whole process all over again. There is a good chance that her brain will not return to the "normal" position and we have decided that unless she really has a huge cognitive loss that the risk is not worth the minimal gains that might be realized. So, putting it in my words, unless something really goes bad, we are done with surgery and will focus on what God gives us to work with in the future.

We have a lot of issues to deal with as we get her back up to speed, but I am confident that we will be able to work through them in the long haul. I keep telling myself that God didn't bring us this far to leave her in her current state. I would appreciate it if those of you that see me often remind me of that if you see I am struggling To stay positive. I will admit that I have struggled a bit of late and much of it is because I am just plain tired. With Judi not eating, I am having to feed her through her feeding tube to ensure she is getting the appropriate nutrition which means I am up at night feeding her since she can only take so much at a time. She has also started vocalizing A LOT at night and I am always waiting to hear that first word so that I can encourage her and obviously want to know what she is trying to say.

We have been spoiled a bit lately by some very good cooks. Many thanx to Angela Macintosh and Rebecca Cantrell for the awesome vittles. Jessica says you have an open invitation to come live with us! I also wanted to thank all of you that wished Judi a Happy Birthday on 4/15. I read all of your messages to her and i could tell she enjoyed hearing from you. Feel free to stop by and see her if you get the chance. I still believe it will be one of those visits that finally snaps Judi back to us.

I hope all of you have a Happy Easter and don't forget what the day is really for. If you are so inclined, say a little prayer for Judi's continued recovery.

Steve

Home Again

I was able to bust Judi out of the hospital today and both of us were glad to be back home. It is great to see my girl with a "round head" again and you can tell she already feels better. We will go back in a couple of weeks to have a follow up CT scan and check the incision to ensure it is healing well. The prosthesis was a perfect fit for her and there is very little swelling. Judi did have a series of three seizures during the day of surgery (none of them severe). The Drs were not overly concerned due to level of activity she had been exposed to and the severity. There was actually some discussion that it may be a positive sign that her brain activity had increased, but in the end, no one knows for sure.

The plan now is to let her heal for a couple of weeks and then hopefully get her back into outpatient rehab. I am hopeful that she will gain ground quickly and get back to where she was before we had to remove the bone flap this summer. Whether quick or slow, as long as she continues to gain ground it will be a huge success.

I'm going to keep this one short since I am just about out of gas for the day. Although this was a short stay, neither of us seemed to get any rest. I'll update as changes occur and thanx from the bottom of my heart for all of the prayers.

Steve

Surgery Update

Hi all - Jessica here. I just spoke to Dad who has asked me to do a quick update. Mom's surgery was uneventful and she is already out of recovery. Everything went well and she is already awake, laughing at Dad. (I'm guessing he does not look fashionable in a gown or gloves.)

Thanks for all your prayers and just keep Mom close to your hearts.

O Dark Thirty!

A quick note to remind everyone to say a special prayer for Judi tonight and tomorrow. Her surgery is scheduled for 0730 and I have to have her at the hospital by 0515!!!!

The length of surgery is dependent on how much the skin has attached itself to the dura layer encasing her brain. It has to be carefully separated so that the prosthesis can be slipped into place. It is a meticulus process and if done improperly could result in a bleed or other damage. If all goes well, she will be home Wednesday. I'll have my computer with me tomorrow and will do a quick blog update as soon as she is out and settled in.

Pray hard that this is the last one and that Judi will be on a fast track back to us.

Steve

The Date is Set

Judi's surgery is scheduled for Tuesday, April 5th. We will do her pre-op tests/paper work on Monday and then bring her in the morning of surgery. I did have to take her back again last week for another CT scan. It appears that she moved a little at one point and the CT technician did not see it. The company that is building her prosthesis was concerned that they may not have the best possible fit without having another scan. I obviously said we need to do it again. We definitely don't want to be in the middle of surgery trying to make it fit. The surgery date was driven by the amount of time needed to get the prosthesis built and in the hands of the surgeons. It is a polymer type material as opposed to some type of metal. This will allow them to shape it a little if needed and will not impact the viability of any scans down the road.

We are currently scheduled for the first session. I have learned a bit about how the schedules seem to go at MCG and this slot was one that rarely seemed to get bumped for a higher priority case. This is Master's Week and I was a little concerned initially when they asked me about this date. I wanted to make sure that the team doing the surgery wouldn't be thinking more about being on the golf course than what was going on with Judi. As it turns out, none of the Drs doing her case are golfers and they preferred to be able to work that week since the operating room (OR) schedule was light. Assuming all goes well, she will be there a couple of days and then come home to recover. I don't want to spend one minute more than we have to in the hospital. Neither of us get any rest while she is there and it's obvious she does recover faster (better) at home.

I am glad we were able to do the surgery right away since Judi really seems to be losing ground lately. I am hoping it is a bit of apprehension about the pending surgery. It is also possible that Judi remembers the loss of one of her closest friends during a very similar surgery. Judi was devastated by the loss of Jill and was still learning to cope with it when she had her accident. It is also possible that Judi is thinking of her Mom. I tell Judi every day what the date is and it is very possible she remembered the anniversary date of her Mom's passing. It was 20 years ago on March 18 when we lost an awesome lady to cancer. Judi and her Mom were very close and it is one of the things that drove Judi's desire to work in the Oncology field.

Regardless of the cause, we are going to beat it! Once Judi gets healed up from this surgery, I am going to try and get her away to the beach for a few days. We need to try and get our lives back on a normal (as much as we can in this situation) track. I would have to say that the three of us have just been "existing" since the accident. I can hardly believe the accident was almost two years ago and we are just about to a point where she is in a stable physical condition. I know in my heart that she is going to excel mentally if I can finally get all the physical issues behind us. Judi just needs a little momentum in the positive direction to build upon. I dread the thought of another surgery, but I pray it's the last one. Each of them seem to drain a little life out of me. It will be a tough several months as we wait and see if the shunt will have to be changed out. Once we have that behind us, we will be able to focus on the future and what that has in store for us.

I have talked to a lot of people lately about doing whatever it takes to give Judi a chance to come back. Many of you know that all three of us love music in practically every form. I was stunned by a song that Rascall Flatts recently released call "I Won't Let Go." I was stunned because every word in that song described how I feel about both my girls, but especially for Judi in her current state. I could have written that song. I have said every word in that song to Judi over the last couple of years and it just brought all of it together for me after all this time. I cannot listen to it without tears coming to my eyes, but it always makes me take a deep breath at the end and find the resolve to keep going. I have attached a clip where they performed it on a show. I encourage all of you to give it a listen, especially if you are facing your own challenges. I continue to thank all of you for your prayers and ask that you mark your calenders for April the 5th and make a special little prayer for Judi that day.

Steve

Surgery On The Horizon

I know it has been a long time since the last post, but I wanted to wait until we had Judi's neurosurgeon follow up before posting again. That appointment was originally scheduled for early February, but it kept getting moved by the Dr.'s office for one reason or the other. We did finally have the appointment today. I'll update you on that visit and then cover the last month.

First and foremost: CT scan shows all clear on the infection and no unusual scar tissue buildup!!!! We also agreed that Judi is ready to have her prosthesis installed ASAP. We completed the scans necessary to have it fabricated and once we have it, the surgery can be scheduled. This one will also involve a plastic surgeon to ensure that we get the best fit possible and to manage the areas where her skin is very thin around the bone structure of her skull. Judi has lost a lot of ground since the surgery this summer and I can"t possibly describe what a relief it will be to have this behind us. She should only be in the hospital a couple of days if all goes well here. Judi had picked up a lot of momentum before the infection set us back and I am banking on that momentum returning following this surgery.

There is one issue that we will have to continue monitoring. Her brain on the right side is significantly depressed towards the rear of her skull. Hopefully it will correct itself when the prosthesis is installed. If it does not, we may have to change her shunt to a different type that can be adjusted externally. I pray we don't have to go through that. That would be another significant surgery and it involves the left side of her brain which is the side that is currently functioning reasonably well. The surgeons cautioned me not to expect too much from the surgery and reminded me that trauma patients typically get a little worse with time. I rogered that and once again reiterated my belief that God will ultimately make that decision. I still have faith that God did not send all of the help the day of her accident to leave her in this state of semi-consciousness for the rest of her life.


This has been a month full of ups and downs. I have seen Judi at her best and at her worst since the surgery this summer in the span of just a few days. One of the most difficult parts of my day is coming in the door after work not knowing which Judi I will find on the other side. The "up" days are always a joy because she seems so connected and we have an opportunity to laugh and share some fun time together. The "down" days drain all the energy I have trying to remain positive as we have to battle through every little activity. I have to constantly remind myself that she doesn't understand what she is doing and not let my breaking heart show through. Judi's strength and tenacity are wonderful things when they focused on what you want her to do, but they are a royal pain when she is working against you. Pray for both of us and if I start showing up to work with patches of hair missing from pulling it out all night, you'll know I am losing the battle!

We did get the opportunity to attend the Pops concert at the Bell Auditorium. The music of the evening was Queen and we had a great time. Judi and I both love Queen and thanx to Joel and Rebecca Cantrell for allowing us to share the evening with them. Judi is a social gal by nature and Rebecca went out of her way to keep Judi engaged and she responded well to it. I keep looking for these types of things to take her to so if you ever have any ideas, please let me know.

I'll do another update once we have the surgery all lined up. I expect it will be 2-3 weeks away. Don't hesitate to stop by if you have a chance and as always, I would greatly appreciate your prayers as we take the next step along the road to Judi's ultimate recovery.


Steve

Happy New Year

I can hardly believe that 2011 is already here and that I still have no clear understanding of where this journey will take us. I have been asked a lot of questions lately that make me think it is time to do a review of Judi's overall condition.

Judi is still confined to a wheel chair and is unable to move her left arm or leg on command. They do respond to stimulus and reflex which indicates the lack of movement is associated with the brain injury. She is not able to move/control the wheelchair at this time.

She is still unable to talk, but does make many sounds and has a heart warming laugh. The inability to talk is fairly common with brain injuries due to the multiple areas of the brain that come into play to perform this task. She still has significant difficulty swallowing. The issues here are similar to those that impact talking. Judi also had significant damage to the temporalis muscle on the right side as a result of the craniotomy that was performed right after her injury. This is the muscle you feel when you rub your temple and functions to close your mouth to provide strength for chewing. This results in an imbalance on her jaw especially when chewing. She is able to eat foods that I grind up almost to a puree and drink liquids that are thickened to a "nectar" consistency. The food/liquid has to be thick enough that she is able to swallow fast enough to prevent them from going down her windpipe. To give you an idea of the work involved for her to eat, it takes about an hour and a half for Judi to eat a meal. This consumes a lot of our "alert time," but the only way she gets better at it is to continue doing it.

She is able to answer "yes" or "no" to questions using hand signals when she is really tuned in. There is a significant delay between question and response as her brain processes everything. This is commonly referred to as "slowing." We really lost a lot of ground here following the removal of her bone flap this summer due to the infection. She was signing approximately 28 signs prior to the surgery with very little slowing and now struggles with 3 or 4 signs. This is getting better. Judi has shown a fairly significant improvement in this area over the last couple of weeks. Judi's awareness and understanding of what is going on around her remains at a high level and she is ALWAYS listening. She enjoys watching all of her favorite TV shows and movies. It is obvious that she comprehends what is going on by the way she responds to even subtle humor and comments. Her biggest issue is input/output functions of her brain. I can tell she is trying hard to get her body to respond to what her brain is telling it to do, but it is just not cooperating (YET!). When you put all this together, Judi still requires someone to be with her 24 hrs a day and depends on them for all of her needs.

So what's on the horizon?
Recovery of her left side movement is still possible. We continue to keep up her therapy at home that maintains the strength in these muscles and provides the nerve stimulation that tries to activate the brain's control again. Time/practice is the main strategy for talking and swallowing improvement. We are also performing the exercises and therapy to continue improvement in this area as well. I am researching the possibility of reconstructive surgery to restore function to the temporalis muscle. My hope is that after we get the prosthesis installed this year, Judi will quickly recover to the level she was at prior to the infection this summer and continue recovering at an accelerated rate. We continue to perform neurofeedback (NF) at home as well as routine trips to NC to improve brain function. Just for general information, the Army has also started using NF for the troops that are returning home with brain injuries. I am praying hard that there will be a medical break through in the treatment of this type of brain injury due to the large number of troops returning home that are impacted by the same type of injury that Judi has.

I continue to be very optimistic regarding Judi's potential for recovery. I have been able to have some fairly good conversations with her when she was alert by asking her a series of questions that she can answer yes or no. I try to ask different questions from multiple angles to ensure that answers are consistent and she is not just guessing. Here are a few items that are probably of interest:
1) She remembers most of the events leading up to the accident and tells me she remembers the accident itself. I believe that her memory is starting to come back to her (slowly, but surely) because when we did a similar exercise in the fall her memory seemed to stop about three months before the accident.
2) She promised me that she will not give up trying to find a way back. I promised her that I wouldn't give up either.
3) She is also very scared. I asked her this question point blank and it was one of the fastest "yes responses" I have ever received from her. I have indicated that she showed a lot of fear during the last hospital stay and after the last seizure she was also frightened. I have reassured her that it is normal to be scared and that I would be with her through it all. She always gives me a big smile then. I suspect she is also concerned about what this is doing to Jess and me so I continue to talk to her about things we are going to do in the future. Judi has been around folks in her condition for many years, so I try to be straight up with her. She always responds well when I tell her "I don't hear no fat lady singing!"

I have also been asked a lot of questions about how Jess and I are doing. I won't speak for Jess, but would say she is coping in her own way and continues to be a great help to me and her Mom. As for me, I'll admit straight up that I am tired physically, mentally and emotionally. I know that I cannot keep up this pace indefinitely, but I will not give up on her. I had hoped I could slow down a bit last fall, but the summer surgery put the kabosh on that plan. Hopefully I can slow down a bit after the prosthesis surgery. I feel like I have the reserves to continue on. It is a source of energy to me when I see her improving. I DO appreciate the concern that many of you have expressed and I am truly humbled by the support from so many. I continue to lean heavily on the belief that God would not put a larger burden on me than I can handle.

Hopefully this brings everyone up to speed on where we are today. Please keep us in your prayers. I am convinced that the power of those prayers is what is fueling all three of us. Thanx again for all your support.

Steve