It seems that the Facebook page is working well. I have found that it is much easier to do updates using the Facebook format than using "Blogger," particularly with a mobile device. I had intended to maintain both formats since many people didn't have (or want) a Facebook account. Since we are able to see Judi's page without an actual Facebook account, I would like to stop updating the blog as long as everyone is able to see the information. If there is another reason we should keep updating the blog instead of Facebook, please let me know.
If there is anyone that cannot get to TeamJudi's Facebook page, please email me at swilk@knology.net and we'll figure out what the problem is, or I will get the info to you in a different format. I don't want anyone not to be able to access the info that wants it.
Steve
Saturday, July 21, 2012
Sunday, July 15, 2012
Facebook Page Up and Running (I Think)
I think we have the TeamJudi Facebook page up and running. Jessica is working on getting items cross posted between the blog and the page automatically, but we'll keep both up to date for now. The Facebook page is much easier to do short and sweet updates on than the blog site (especially using iPhone or iPad). You do not have to be a Facebook member or user to access the page using the link below. Just copy and paste the link in your browser (or you can type it in) and it should take you to the page. If you are a Facebook user, you already know how to do it. Let me know if there are any problems and I'll get Jessica to fix them.
Steve
http://www.facebook.com/pages/Team-Judi/130511830413789
Steve
http://www.facebook.com/pages/Team-Judi/130511830413789
Saturday, July 14, 2012
Another Friday 13th OR Visit
There are a lot of things in flux as I put together this entry, but this is where we are today. I expect it to change as we work through the weekend.
Judi went to surgery yesterday to have a tracheostomy done. They did it in the operating room (OR)due to all of her other issues and the fact that she had one previously (scar tissue can complicate the process). Yes, it was Friday the 13th again (prosthesis was removed 4/13). She is significantly more comfortable, but still a little confused about how to breathe in this condition. As you probably figured out, her neurological condition has not improved significantly as a result of the shunt valve replacement. Her head has refilled with fluid as planned and is stable with the brain ventricles at the appropriate size. As much as I hate to say it, she has actually lost a little ground. It is impossible to know if this is due to the loss she was already experiencing as a result of the flap removal or from the issues she had in surgery last week. Just gotta stay positive here until we get her put back together.
She continues to struggle with the "panic attack" episodes. As they try to reduce her level of sedation, the frequency of these episodes increase. I still believe they are seizures, but there is still a split among the doctors on whether they are seizures or over stimulation of a nerve center. It doesn't matter to me what they call them as long as they figure out how to stop them. I believe these are the same episodes she was dealing with before we came to the hospital. The neurologists are looking hard at what is going on here. We may take her for a 24 hour EEG to determine once and for all whether it is seizure activity. I reminded them of the medications she was previously on that helped control these to some extent and got them to start those again. While she was sedated, it really didn't matter.
Putting her head back together will be the big discussion early in the week. I have discussed her current physical condition with the Medical ICU (MICU) doctors and they believe she is healthy enough for surgery. The consensus from a purely health standpoint is that further delays would only result in her losing ground (due to the effects of her neuro condition). The plan was to move forward with the graft surgery next week if her neuro condition did not improve significantly as a result of the shunt remediation. I believe that will be the path we take. There is an outside chance we might opt to go with a prosthesis again now that we know for sure she has this "sinking flap syndrome." We need to have a good sit down discussion with the neuro and plastic surgeons to make sure we understand the impact this could have on each option and how to prevent us from ever being here again. The complication created by the syndrome is the skin tends to get sucked into the joint between the skull and prosthesis/bone and causes the skin to break down over time. We believe this was either the cause or key contributor to both previous failures. I'll keep everyone posted on where we land.
Regardless of which path we choose, we have to do something. I owe that to Judi. As you can imagine, Judi and I have had many discussions over the years about our wishes if we were to become critically ill/injured. I know she would absolutely want to take the risk of another surgery if there was a chance it would improve her quality of life from where it is today. Judi's condition is not good. I hesitate to write this because it some how makes it more real to those of us that are unwilling to give up, but I want everyone to know the battle she is fighting. Tears fill my eyes as I put this in words, so I'll do my best. Judi no longer has control of her arms or legs. As she lays in bed, she is stiff from her neck to her toes unless she is sedated. It is unclear what her mental status is, but she is unable to focus, follow any commands or interact at all. When she is not at least mildly sedated, she is consumed by the "panic attack" episodes which quickly spiral her out of control and requires sedation to break. She cannot swallow, so she gets her food, water and meds through her PEG. Her inability to swallow prevents her from managing secretions in her mouth so she will need a trach (at a minimum) to breathe and not compromise her airway. In this condition, she will only continue to lose ground over time. Just so there is no confusion, the fact that I am writing this should be in no way, shape or form, construed as giving up on Judi's chance to recover. It is simply to understand why it is so critical to get Judi's flap restored as soon as possible even if there is risk involved. There are no guarantees that this will work either, but it is her best chance for now.
There was not a lot of good news this time, but there is good in the fact that we still have the opportunity to fight! Many are not given that opportunity. It is always a reality jolt to sit in a Level 1 trauma center Emergency Room (ER) for a day followed by a couple of weeks in an ICU. I'll remind everyone of something that happened a little over 3 years ago. When Judi had her accident, within minutes I had a nurse, 2 EMTs and an Orthopaedic Surgeon helping her on the side of the road. I remain firmly convinced that God did not save her that day to leave her in the condition she is in today. We have to keep fighting for her. I miss Judi more than anyone would ever be able to understand. We have been together practically our entire adult lives and she is my best friend as well as my wife. She is also Jessica's mother and I think all of you know how much I love my daughter. That's worth fighting for! I have to admit I have lost a couple of fights in my lifetime, but I have always gone down swinging!!
Steve
Judi went to surgery yesterday to have a tracheostomy done. They did it in the operating room (OR)due to all of her other issues and the fact that she had one previously (scar tissue can complicate the process). Yes, it was Friday the 13th again (prosthesis was removed 4/13). She is significantly more comfortable, but still a little confused about how to breathe in this condition. As you probably figured out, her neurological condition has not improved significantly as a result of the shunt valve replacement. Her head has refilled with fluid as planned and is stable with the brain ventricles at the appropriate size. As much as I hate to say it, she has actually lost a little ground. It is impossible to know if this is due to the loss she was already experiencing as a result of the flap removal or from the issues she had in surgery last week. Just gotta stay positive here until we get her put back together.
She continues to struggle with the "panic attack" episodes. As they try to reduce her level of sedation, the frequency of these episodes increase. I still believe they are seizures, but there is still a split among the doctors on whether they are seizures or over stimulation of a nerve center. It doesn't matter to me what they call them as long as they figure out how to stop them. I believe these are the same episodes she was dealing with before we came to the hospital. The neurologists are looking hard at what is going on here. We may take her for a 24 hour EEG to determine once and for all whether it is seizure activity. I reminded them of the medications she was previously on that helped control these to some extent and got them to start those again. While she was sedated, it really didn't matter.
Putting her head back together will be the big discussion early in the week. I have discussed her current physical condition with the Medical ICU (MICU) doctors and they believe she is healthy enough for surgery. The consensus from a purely health standpoint is that further delays would only result in her losing ground (due to the effects of her neuro condition). The plan was to move forward with the graft surgery next week if her neuro condition did not improve significantly as a result of the shunt remediation. I believe that will be the path we take. There is an outside chance we might opt to go with a prosthesis again now that we know for sure she has this "sinking flap syndrome." We need to have a good sit down discussion with the neuro and plastic surgeons to make sure we understand the impact this could have on each option and how to prevent us from ever being here again. The complication created by the syndrome is the skin tends to get sucked into the joint between the skull and prosthesis/bone and causes the skin to break down over time. We believe this was either the cause or key contributor to both previous failures. I'll keep everyone posted on where we land.
Regardless of which path we choose, we have to do something. I owe that to Judi. As you can imagine, Judi and I have had many discussions over the years about our wishes if we were to become critically ill/injured. I know she would absolutely want to take the risk of another surgery if there was a chance it would improve her quality of life from where it is today. Judi's condition is not good. I hesitate to write this because it some how makes it more real to those of us that are unwilling to give up, but I want everyone to know the battle she is fighting. Tears fill my eyes as I put this in words, so I'll do my best. Judi no longer has control of her arms or legs. As she lays in bed, she is stiff from her neck to her toes unless she is sedated. It is unclear what her mental status is, but she is unable to focus, follow any commands or interact at all. When she is not at least mildly sedated, she is consumed by the "panic attack" episodes which quickly spiral her out of control and requires sedation to break. She cannot swallow, so she gets her food, water and meds through her PEG. Her inability to swallow prevents her from managing secretions in her mouth so she will need a trach (at a minimum) to breathe and not compromise her airway. In this condition, she will only continue to lose ground over time. Just so there is no confusion, the fact that I am writing this should be in no way, shape or form, construed as giving up on Judi's chance to recover. It is simply to understand why it is so critical to get Judi's flap restored as soon as possible even if there is risk involved. There are no guarantees that this will work either, but it is her best chance for now.
There was not a lot of good news this time, but there is good in the fact that we still have the opportunity to fight! Many are not given that opportunity. It is always a reality jolt to sit in a Level 1 trauma center Emergency Room (ER) for a day followed by a couple of weeks in an ICU. I'll remind everyone of something that happened a little over 3 years ago. When Judi had her accident, within minutes I had a nurse, 2 EMTs and an Orthopaedic Surgeon helping her on the side of the road. I remain firmly convinced that God did not save her that day to leave her in the condition she is in today. We have to keep fighting for her. I miss Judi more than anyone would ever be able to understand. We have been together practically our entire adult lives and she is my best friend as well as my wife. She is also Jessica's mother and I think all of you know how much I love my daughter. That's worth fighting for! I have to admit I have lost a couple of fights in my lifetime, but I have always gone down swinging!!
Steve
Saturday, July 7, 2012
Post Surgery Update
A lot has happened since my last post. Some good, and some not so good. Judi's lungs are totally clear and there are no signs of infection anywhere (blood, urine or lungs). She is still on the ventilator and is very weak. We also identified that she has a blood clot in her right arm. The terminology is "deep vein thrombosis," or DVT for short when it is in one of the veins deep in the extremity. It is only a partial blockage and the primary concern is that it could break free and get lodged in a lung (that would be very bad). They started her on a blood thinner to prevent any other clots and just let this one be absorbed by the body over time since there is no full blockage (messing with them increases the risk of breaking free). I always get worried about blood thinners when we are dealing with an unknown head issue and doubly cautious when surgery is in the picture.
Judi lost the ability to move her right arm/leg late Tuesday/early Wednesday. As you can imagine, I am worried sick about that. The belief is that this is a result of the skin flap pulling in against her brain due to the combined effects of "sinking flap syndrome" and the fact her shunt is passing too much fluid from her brain. This resulted in significant pressure on her brain and actually forced part of it into a place it shouldn't go. Recall that this was the issue that was originally driving us to get her into surgery to correct.
She is also continuing to have periodic episodes that the only description that comes to mind is a severe panic attack. Sometimes they come out of no where and others are due to some simple stimulus (touch her, roll to a new position, etc.). She starts breathing hard on the ventilator tube in her mouth and I believe starts to feel she can't get enough air (try breathing through a large straw). Once you start to panic, you breath faster and shallower and the whole thing intensifies. Her blood pressure and heart rate start climbing and her temperature takes off as well (working muscles hard). The only way to break the cycle once it gets going is to give her a sedative/pain medication to relax her. We can't let it go for long because the oxygen levels in her blood will get to dangerously low levels. I suspect she had a mild one of these that caused us to bring her to the hospital (she didn't have a ventilator tube then, she was breathing through her nose and collapsing her nostrils). This is definitely what happened when she had the issue that ultimately led to putting her on the ventilator. The only airway we could get her initially was a "trumpet" that goes in a nostril and holds it open (another straw).
With all of the issues piling up, we made the decision that the best thing for Judi's health was to replace the shunt valve in Judi's head with a variable valve. This would allow us to control the pressure in her head by controlling the about of fluid being drained off. Judi had that surgery last night and the valve was replaced successfully and the shunt is working correctly. There was an issue during the surgery that has us concerned. When the old valve was removed, there was a large pressure shift in Judi's brain resulting in some significant movement of her brain. There is the possibility that she suffered some brain damage as a result of this. The fact that the pressure was so negative just validated that we needed to do this surgery. Her neuro checks (pupil dialation, response to external stimulus, etc.) after surgery were not good, but improved significantly over night. Her head also filled significantly over night and we had to slow it down some this morning to make sure we didn't go too fast. It is a good sign that her condition improved over night as her brain was allowed to return to its normal position. I can say that last night was one of the longest nights of my life. I talked with her, prayed with her and dealt with some watery eyes (must be the air in this room) from the minute I talked with the surgeon until I could see she was heading in the right direction.
So what's the plan? The plan is a little squishy right now (those of you that know me also know how much I hate that), but lots of things are still changing. If Judi recovers to a point close to her baseline before all of his started and we can get her off the ventilator, we'll take her home and let her get strong and do the rib graft at a later date. If she doesn't recover, we will put a trach in (minimize chance of damaging her vocal chords, throat, etc. with tubes going through them) and move forward with the graft. There is a real risk that there is an infection laying out there to create a problem doing it this soon. In this case, the benefits out weigh the risk. If this doesn't work, we'll have to determine the next step.
At this time, I am going to remain confident that one of these strategies will be successful (THEY HAVE TO BE!!) I have received numerous well wishes, kind words/acts and prayers over the last several days. I can't thank you enough. Most have asked if there is anything they can do to help us through this difficult time. In addition to the prayers, I would ask all of you that knew Judi not to forget her. It has been such a long journey, I know that you have moved on with your lives and that is as it should be. Take a few minutes and remember that ball of fire named "Judi with an i." I saw that fire in her eyes last night as I begged her not to give up. I refuse to give up on Judi and I am convinced that if we keep lifting her up (physically, mentally, emotionally and spiritually) she will find a way back to us. I just know it in my heart.
Steve
Judi lost the ability to move her right arm/leg late Tuesday/early Wednesday. As you can imagine, I am worried sick about that. The belief is that this is a result of the skin flap pulling in against her brain due to the combined effects of "sinking flap syndrome" and the fact her shunt is passing too much fluid from her brain. This resulted in significant pressure on her brain and actually forced part of it into a place it shouldn't go. Recall that this was the issue that was originally driving us to get her into surgery to correct.
She is also continuing to have periodic episodes that the only description that comes to mind is a severe panic attack. Sometimes they come out of no where and others are due to some simple stimulus (touch her, roll to a new position, etc.). She starts breathing hard on the ventilator tube in her mouth and I believe starts to feel she can't get enough air (try breathing through a large straw). Once you start to panic, you breath faster and shallower and the whole thing intensifies. Her blood pressure and heart rate start climbing and her temperature takes off as well (working muscles hard). The only way to break the cycle once it gets going is to give her a sedative/pain medication to relax her. We can't let it go for long because the oxygen levels in her blood will get to dangerously low levels. I suspect she had a mild one of these that caused us to bring her to the hospital (she didn't have a ventilator tube then, she was breathing through her nose and collapsing her nostrils). This is definitely what happened when she had the issue that ultimately led to putting her on the ventilator. The only airway we could get her initially was a "trumpet" that goes in a nostril and holds it open (another straw).
With all of the issues piling up, we made the decision that the best thing for Judi's health was to replace the shunt valve in Judi's head with a variable valve. This would allow us to control the pressure in her head by controlling the about of fluid being drained off. Judi had that surgery last night and the valve was replaced successfully and the shunt is working correctly. There was an issue during the surgery that has us concerned. When the old valve was removed, there was a large pressure shift in Judi's brain resulting in some significant movement of her brain. There is the possibility that she suffered some brain damage as a result of this. The fact that the pressure was so negative just validated that we needed to do this surgery. Her neuro checks (pupil dialation, response to external stimulus, etc.) after surgery were not good, but improved significantly over night. Her head also filled significantly over night and we had to slow it down some this morning to make sure we didn't go too fast. It is a good sign that her condition improved over night as her brain was allowed to return to its normal position. I can say that last night was one of the longest nights of my life. I talked with her, prayed with her and dealt with some watery eyes (must be the air in this room) from the minute I talked with the surgeon until I could see she was heading in the right direction.
So what's the plan? The plan is a little squishy right now (those of you that know me also know how much I hate that), but lots of things are still changing. If Judi recovers to a point close to her baseline before all of his started and we can get her off the ventilator, we'll take her home and let her get strong and do the rib graft at a later date. If she doesn't recover, we will put a trach in (minimize chance of damaging her vocal chords, throat, etc. with tubes going through them) and move forward with the graft. There is a real risk that there is an infection laying out there to create a problem doing it this soon. In this case, the benefits out weigh the risk. If this doesn't work, we'll have to determine the next step.
At this time, I am going to remain confident that one of these strategies will be successful (THEY HAVE TO BE!!) I have received numerous well wishes, kind words/acts and prayers over the last several days. I can't thank you enough. Most have asked if there is anything they can do to help us through this difficult time. In addition to the prayers, I would ask all of you that knew Judi not to forget her. It has been such a long journey, I know that you have moved on with your lives and that is as it should be. Take a few minutes and remember that ball of fire named "Judi with an i." I saw that fire in her eyes last night as I begged her not to give up. I refuse to give up on Judi and I am convinced that if we keep lifting her up (physically, mentally, emotionally and spiritually) she will find a way back to us. I just know it in my heart.
Steve
Monday, July 2, 2012
Status Update
Judi has improved significantly since my last post. Her right lung is completely clear and her left lung is almost clear as well. The pace at which her lungs recovered eliminate infection as the problem (VERY good news). The data was reviewed by a lot of pulmonary folks today and no one is sure exactly what occurred. They have seen this before with brain injuries. The settings on the ventilator are down to normal and it is operating in support mode only. This tells us that her lungs are functioning well and that there is no reason to believe she will have any damage or difficulty breathing on her own.
The neuro team believes the underlying cause of the breathing issues is her neurological status. Her inability to swallow and handle the secretions that we all have were likely the source of the problem. The surgeons want to do the graft as soon as she is physically able to handle it. Believe it or not, Judi's blood pressure is once again the limiting issue. Her blood pressure is running low and we are having to give her medication to keep it up. Some of you may recall we had the same issue when she was originally injured. We can't take her to surgery until her blood pressure is stable in the normal range without medication. She could suffer severe brain injury if she had a low blood pressure transient during surgery.
The last thing we have to decide is what to do with the ventilator. (I have been getting an on-the-job training program on how they work and what the settings tell you from the respiratory technicians the last couple of days.) There is a balloon that surrounds the tubes that go down your throat. When the balloon is inflated, it provides a seal that isolates the mouth/nose from the lungs and allows all of her air to go through the tubes. It also prevents any secretions or fluids that come from her mouth or nose from getting to the lungs (this is what is protecting her lungs now). We need to do her head surgery and ensure she is managing these secretions before we remove the isolation. This leaves us with the following options: 1) keep her on the ventilator until she is done with surgery and then ween her off while monitoring the swallowing/breathing process or 2) ween her off the ventilator and put her on a trach. The trach has the same balloon setup, but exits in her throat and does not have tubes running through her mouth or vocal chords. I am leaning to the trach option. The trach provides the protection she needs and can theoretically stay in forever. The trach can be capped off (balloon is deflated when capped) to allow her to breathe normally, but can be quickly uncapped and the balloon inflated if she needs an airway. The decision may be driven by timing. They generally like to get the tubes out of the throat in two weeks, but three is the maximum. This prevents damage to her lips, mouth, chords, etc. So, if it takes a while to get her blood pressure stable, we may already be to the point of inserting a trach before her surgery.
I think that is the big stuff. Please keep her in your prayers. They are obviously working. I am not sure most of you realize it, but we came close to losing Judi last Friday. Many people do not recover from where she was Friday night. I know in my heart that God is watching over her for a reason. I will never forget looking into her terrified eyes while holding her thrashing body with one hand and an oxygen mask in the other trying desperately to get her to take a breath. I can only imagine what was going on in her mind. She gave me a smile today when I wished her Happy Anniversary and told her how much I loved her. I sure needed to see that smile.
Steve
The neuro team believes the underlying cause of the breathing issues is her neurological status. Her inability to swallow and handle the secretions that we all have were likely the source of the problem. The surgeons want to do the graft as soon as she is physically able to handle it. Believe it or not, Judi's blood pressure is once again the limiting issue. Her blood pressure is running low and we are having to give her medication to keep it up. Some of you may recall we had the same issue when she was originally injured. We can't take her to surgery until her blood pressure is stable in the normal range without medication. She could suffer severe brain injury if she had a low blood pressure transient during surgery.
The last thing we have to decide is what to do with the ventilator. (I have been getting an on-the-job training program on how they work and what the settings tell you from the respiratory technicians the last couple of days.) There is a balloon that surrounds the tubes that go down your throat. When the balloon is inflated, it provides a seal that isolates the mouth/nose from the lungs and allows all of her air to go through the tubes. It also prevents any secretions or fluids that come from her mouth or nose from getting to the lungs (this is what is protecting her lungs now). We need to do her head surgery and ensure she is managing these secretions before we remove the isolation. This leaves us with the following options: 1) keep her on the ventilator until she is done with surgery and then ween her off while monitoring the swallowing/breathing process or 2) ween her off the ventilator and put her on a trach. The trach has the same balloon setup, but exits in her throat and does not have tubes running through her mouth or vocal chords. I am leaning to the trach option. The trach provides the protection she needs and can theoretically stay in forever. The trach can be capped off (balloon is deflated when capped) to allow her to breathe normally, but can be quickly uncapped and the balloon inflated if she needs an airway. The decision may be driven by timing. They generally like to get the tubes out of the throat in two weeks, but three is the maximum. This prevents damage to her lips, mouth, chords, etc. So, if it takes a while to get her blood pressure stable, we may already be to the point of inserting a trach before her surgery.
I think that is the big stuff. Please keep her in your prayers. They are obviously working. I am not sure most of you realize it, but we came close to losing Judi last Friday. Many people do not recover from where she was Friday night. I know in my heart that God is watching over her for a reason. I will never forget looking into her terrified eyes while holding her thrashing body with one hand and an oxygen mask in the other trying desperately to get her to take a breath. I can only imagine what was going on in her mind. She gave me a smile today when I wished her Happy Anniversary and told her how much I loved her. I sure needed to see that smile.
Steve
Sunday, July 1, 2012
How Did We Get Here??
I can hardly believe the situation our little family finds itself in today. I keep hoping it is just a bad dream and that any minute I will wake up. Unfortunately, it is all too real.
Judi's caretaker called me Thursday around lunchtime and indicated Judi was having severe problems breathing and was starting to lose her color. An ambulance was dispatched and she was taken to MCG at my request. The paramedics got her on oxygen and she was in what they called moderate respiratory distress when she got to the ER. I wanted her at MCG because I knew this was going get complicated in the long run due to the changes in her neurological condition following her surgery in April to remove the prosthesis. All of the doctors that have attended to her since then were at MCG. As I walked through her recent history, I could tell the ER doctor was struggling with what to focus on first to determine what might be going on. He ordered a broad spectrum of tests that would hopefully narrow down the possibilities.
I'll step back in time for a few minutes so that some of her recent history is more clear. Judi's uncontrolled movements obviously concerned me, so I have her working with a "movement disorder" specialist. They are neurologists that specialize in this area. He did not identify anything conclusive. I asked him if it could be caused by some electrolyte imbalances that may have developed after the surgery and all the antibiotics she was talking. He indicated that it could (which I already knew from some research) and ordered some blood work to check it out. That blood work came back with her sodium level slightly high and we started adding more water into her routine to bring it back down. During this same period of time, Judi saw her neurologist and he was not sure what her movements were, but did not think they were seizures. The steep change in Judi's neurological condition over the weekend concerned me a great deal, so on Monday (6/25) I contacted her neurosurgeon, and he scheduled her for an urgent CT scan for Thursday (6/28) to see if anything had changed. I was also worried that Judi might have a UTI just because of the way she was acting so I scheduled her an appointment with her urologist to get that checked out as well. Monday night (6/25), I became concerned with Judi's breathing. She seemed to be struggling some and was wheezing. It got bad enough that I packed her up and took her to the Doctor's Hospital ER (it is right down the road from the condo) to get her checked out. They did a chest x-ray to make sure her lungs were clear and after I walked through her recent history, they did a CT scan of her head to insure nothing had changed there. The x-ray was clear (this is an important piece of data) and the CT showed no issues.
Now back to Thursday (6/25). The blood work showed her sodium levels had increased (a big surprise with the increase in fluids she had). We started giving her some additional water to bring those levels down. The urine test indicated she had a UTI with a unique bacteria that is typically found only in hospitals (it subsequently grew out at a very low level and probably did not need to be treated). This "bug" is one of the few that the antibiotics she had been taking following surgery (last 9 weeks) would not eliminate. We started an antibiotic for that. They did a chest x-ray and that was clear. They did another CT scan and it showed no issues. They did an x-ray of her shunt and associated drain and determined it was clear (if it was plugged it could affect her mental status). They admitted her to the hospital since the antibiotics she needed could only be given by IV and they wanted to monitor her sodium levels since they were not coming down as expected. Thursday night went relatively uneventful with the primary focus being extra water to address the sodium and antibiotics for the UTI. Judi's "shaking and thrashing" continued, but I think the doctors had convinced themselves that this was likely a result of the sodium and infection combination.
On Friday (6/29), I felt like the shakes were getting worse and asked to have the neuro guys get involved to make sure everything was OK in that arena. The attending physician finally agreed (I wanted to make sure we didn't get into a weekend and I then need help) and one of the hospital neurologists checked on her. He was very concerned about her condition and went off to check her history and talk with her regular doctors. Her neurosurgeon came in as well to check her out (she was scheduled to see him on Monday 7/2). Things start to change fast now. He was concerned about the position of her brain in the latest CT and combined with the change in her neurological state, felt it was necessary to replace her flap soon. Her neurosurgeon is very conservative and his normal stand is a minimum of 6 months wait (prefers a year) before putting something back in after an infection issue to insure all of the infection is absolutely gone before another surgery. The fact that he wanted to do it soon was an indicator to me of how serious he feels it is. He told me I had a difficult decision decision to make (what's new there?). If we wait too long, the brain issue could be unrecoverable without other damage. If we don't wait long enough, the new insert could get infected and we would have to go through this all over again. It was good that Jessica was also there visiting and got to hear all of the discussion as well. He also made a pitch to let him and the plastic surgeon I had issues with do the surgery. He also proposed a much less invasive graft for the repair that I was very interested in (I'll cover that in more detail another day if we opt to go that way). He also understood if I opted to have it done somewhere else. About two hours later, he showed up again and wanted to discuss her condition further. He proposed doing a graft from her ribs that essentially runs flat across the side of her head (as opposed to trying to make it look like what was there before the injury). This makes the surgery much simpler and gets her "buttoned back up" with living tissue from her own body. If anything is likely to survive long term, this would be it. Obviously it wouldn't be "pretty," but right now I am fighting for her survival and could care less and she will always be gorgeous to me! If it works well for her from a cognitive standpoint, we can always go back and put something under the skin that makes her physical appearance whatever she wants it to be. He wanted to do the surgery on Tuesday (7/3) if she was healthy enough and if I would allow him and her previous plastic surgeon do the surgery. I won't go into the details, but we had a long man-to-man talk and I agreed to support that strategy. Things were falling into place until all hell broke loose.
About 8:30 PM on Friday (6/29), I went home to grab a shower and change clothes since her nurse was the same as Thursday and she was comfortable with Judi's needs. When there is a new nurse, I usually leave around 10:30 to get a shower after getting them educated and making sure I am comfortable with them caring for her. When I got back around 9:30 PM, the nurses and doctors were ruffled and were visibly relieved to see me back. She had gone into something like a seizure while I was gone and had an episode of severe respiratory distress. They were struggling to hold on to her (kicking, swinging her arms and desperately trying to get a breath). They finally got her to calm down a little (I think she was just exhausted) and she was able to catch her breath. She was at this point when I came in. I worked with her and got her calm, but you could hear there was some liquid in her throat. We couldn't get it suctioned out because she would bite down hard on anything that went in her mouth. I started warning them that this was a bad situation because I knew she could not swallow well even under the best conditions in her current neurological state. At 10:00 PM, she started struggling again and I alerted everyone. I won't try and describe what I saw, it still brings tears to my eyes, but she was gasping for air and had a terrified look in her eyes. I could almost hear her begging me to help her. The rapid response team was activated and the code team was standing by as I continued to try and get her calmed down while giving her full oxygen flow by mask. She freaked completely if anyone else tried to get around her face but me. Her O2 levels were in the marginal OK range and we kept hoping she would come out of it. The decision was made to take her to the medical ICU since they had they had the capability to supply a higher flow oxygen. After we got there, she finally calmed down a little, but was breathing so shallow that she was just not getting enough oxygen. It had reached the point where we needed to either put her on the ventilator or risk potential brain damage (or worse) if her oxygen got too low and then tried to do it. I already knew in my heart that this decision was coming and there was no doubt in my mind that the answer was to do it now. I was asked by the attending doctor as well as the anesthesia doctor if I was sure this is what I wanted to do. They wanted to make sure I understood that Judi may never come off the ventilator. I know they were only doing their job, but I am so tired of the "system" trying to write her off. I know the heart and spirit in Judi and it just isn't her time to leave us. Perhaps that day will come, but I will know it if it does. For now, as I have said before, I ain't hearing no fat lady singing (or even warming up)!
Moving on. We got her on the ventilator and she obviously started doing better. She was still having difficulty maintaining her O2 levels in her blood stream at the appropriate level. This indicates that there is something wrong with her lungs. A chest x-ray taken then showed a significant portion of her lungs were "injured." That's a loose term here meaning that there is infection, fluid, etc. showing on the x-ray that is likely impacting her ability to get O2 in her blood stream. I was speechless when the pulmonology doctor showed me the X-rays. I asked how this was possible with all the previous x-rays being clear. How did we go from clear to being on a ventilator in a day? He was as perplexed as I was. There are a lot of theories (including some that are neurological in nature) and we will likely never know. If she had been eating/drinking through her mouth, the most likely cause would be having it go down the wrong pipe and get in her lungs. That is very common for people with swallowing difficulties in Judi's condition. It is also possible that she got a lot of secretions going down the back of her throat and aspirated it since she couldn't swallow.
So where are we now. Judi is in the medical ICU at MCG. She is on a ventilator and likely will be for a couple of weeks if things go well. She is getting a wide range of antibiotics to preclude/eliminate any infections in her lungs. Her lungs seem to be clearing a little, but the ventilator settings indicate she has a long way to go before her lungs work at the efficiency needed to get her off the ventilator. Her prognosis is good and there is nothing to indicate that she won't recover and get off the ventilator. It is now just waiting it out and letting her heal. If it shifts out beyond a couple weeks, I'll be faced with making a decision on whether to do a tracheotomy so they can get the tubes out of her throat. The trach is easier on her (no tubes running down her throat)while using the ventilator, but it is a long process to get off of it and Judi's history would indicate a long process if we have to go that route. We will obviously do what is right for her.
I expect to have a very busy and tough day tomorrow. The big issue now will be addressing her brain position issue and her current condition. Recall that her neurosurgeon was at the point on Friday that we do the surgery on Tuesday. She is obviously not in a condition for surgery now, but we'll have to develop a plan. I suspect we are going to come to the conclusion that the two issues are actually linked and if we are going to get her healthy, we will have to address both issues.
So how did we get from being admitted to the hospital for treatment of a UTI to the ICU on a ventilator? It still baffles me.
Here's what I do know. "Team Judi" WILL NOT give up no matter what! I consider all of you out there as members of this team. All of you have supported her in some way or the other. I could list hundreds of ways that we have received support and we have been truly humbled by the kindness shown by so many. I saw a lot of improvements in Judi before we had to get her prosthesis out. We are going to get her healthy and get her head closed up as soon as it is medically safe to do so. We will get her back into rehab(if necessary)and correct any issues that have developed from this hospital stay. Yes, we will likely have to start all over again in many areas. Jess and I have a lot of work to do, but we have done it before and we will do it again. Please don't give up or forget about her. I know that God has something special left for Judi to do in life and I am going to do everything I possibly can to see that she has the opportunity. Tomorrow is our wedding anniversary. 32 years ago, I promised God and the woman I love more than life itself that I would be here for her no matter what. That's what I intend to do. I hate that Jessica is having to go through this all over again. I made a commitment to her a long time ago as well when I decided to become a Dad. I will meet that one too! Make sure you enjoy time with those you love and remember to ask yourself what is truly important.
Keep us in your thoughts and prayers,
Steve
Judi's caretaker called me Thursday around lunchtime and indicated Judi was having severe problems breathing and was starting to lose her color. An ambulance was dispatched and she was taken to MCG at my request. The paramedics got her on oxygen and she was in what they called moderate respiratory distress when she got to the ER. I wanted her at MCG because I knew this was going get complicated in the long run due to the changes in her neurological condition following her surgery in April to remove the prosthesis. All of the doctors that have attended to her since then were at MCG. As I walked through her recent history, I could tell the ER doctor was struggling with what to focus on first to determine what might be going on. He ordered a broad spectrum of tests that would hopefully narrow down the possibilities.
I'll step back in time for a few minutes so that some of her recent history is more clear. Judi's uncontrolled movements obviously concerned me, so I have her working with a "movement disorder" specialist. They are neurologists that specialize in this area. He did not identify anything conclusive. I asked him if it could be caused by some electrolyte imbalances that may have developed after the surgery and all the antibiotics she was talking. He indicated that it could (which I already knew from some research) and ordered some blood work to check it out. That blood work came back with her sodium level slightly high and we started adding more water into her routine to bring it back down. During this same period of time, Judi saw her neurologist and he was not sure what her movements were, but did not think they were seizures. The steep change in Judi's neurological condition over the weekend concerned me a great deal, so on Monday (6/25) I contacted her neurosurgeon, and he scheduled her for an urgent CT scan for Thursday (6/28) to see if anything had changed. I was also worried that Judi might have a UTI just because of the way she was acting so I scheduled her an appointment with her urologist to get that checked out as well. Monday night (6/25), I became concerned with Judi's breathing. She seemed to be struggling some and was wheezing. It got bad enough that I packed her up and took her to the Doctor's Hospital ER (it is right down the road from the condo) to get her checked out. They did a chest x-ray to make sure her lungs were clear and after I walked through her recent history, they did a CT scan of her head to insure nothing had changed there. The x-ray was clear (this is an important piece of data) and the CT showed no issues.
Now back to Thursday (6/25). The blood work showed her sodium levels had increased (a big surprise with the increase in fluids she had). We started giving her some additional water to bring those levels down. The urine test indicated she had a UTI with a unique bacteria that is typically found only in hospitals (it subsequently grew out at a very low level and probably did not need to be treated). This "bug" is one of the few that the antibiotics she had been taking following surgery (last 9 weeks) would not eliminate. We started an antibiotic for that. They did a chest x-ray and that was clear. They did another CT scan and it showed no issues. They did an x-ray of her shunt and associated drain and determined it was clear (if it was plugged it could affect her mental status). They admitted her to the hospital since the antibiotics she needed could only be given by IV and they wanted to monitor her sodium levels since they were not coming down as expected. Thursday night went relatively uneventful with the primary focus being extra water to address the sodium and antibiotics for the UTI. Judi's "shaking and thrashing" continued, but I think the doctors had convinced themselves that this was likely a result of the sodium and infection combination.
On Friday (6/29), I felt like the shakes were getting worse and asked to have the neuro guys get involved to make sure everything was OK in that arena. The attending physician finally agreed (I wanted to make sure we didn't get into a weekend and I then need help) and one of the hospital neurologists checked on her. He was very concerned about her condition and went off to check her history and talk with her regular doctors. Her neurosurgeon came in as well to check her out (she was scheduled to see him on Monday 7/2). Things start to change fast now. He was concerned about the position of her brain in the latest CT and combined with the change in her neurological state, felt it was necessary to replace her flap soon. Her neurosurgeon is very conservative and his normal stand is a minimum of 6 months wait (prefers a year) before putting something back in after an infection issue to insure all of the infection is absolutely gone before another surgery. The fact that he wanted to do it soon was an indicator to me of how serious he feels it is. He told me I had a difficult decision decision to make (what's new there?). If we wait too long, the brain issue could be unrecoverable without other damage. If we don't wait long enough, the new insert could get infected and we would have to go through this all over again. It was good that Jessica was also there visiting and got to hear all of the discussion as well. He also made a pitch to let him and the plastic surgeon I had issues with do the surgery. He also proposed a much less invasive graft for the repair that I was very interested in (I'll cover that in more detail another day if we opt to go that way). He also understood if I opted to have it done somewhere else. About two hours later, he showed up again and wanted to discuss her condition further. He proposed doing a graft from her ribs that essentially runs flat across the side of her head (as opposed to trying to make it look like what was there before the injury). This makes the surgery much simpler and gets her "buttoned back up" with living tissue from her own body. If anything is likely to survive long term, this would be it. Obviously it wouldn't be "pretty," but right now I am fighting for her survival and could care less and she will always be gorgeous to me! If it works well for her from a cognitive standpoint, we can always go back and put something under the skin that makes her physical appearance whatever she wants it to be. He wanted to do the surgery on Tuesday (7/3) if she was healthy enough and if I would allow him and her previous plastic surgeon do the surgery. I won't go into the details, but we had a long man-to-man talk and I agreed to support that strategy. Things were falling into place until all hell broke loose.
About 8:30 PM on Friday (6/29), I went home to grab a shower and change clothes since her nurse was the same as Thursday and she was comfortable with Judi's needs. When there is a new nurse, I usually leave around 10:30 to get a shower after getting them educated and making sure I am comfortable with them caring for her. When I got back around 9:30 PM, the nurses and doctors were ruffled and were visibly relieved to see me back. She had gone into something like a seizure while I was gone and had an episode of severe respiratory distress. They were struggling to hold on to her (kicking, swinging her arms and desperately trying to get a breath). They finally got her to calm down a little (I think she was just exhausted) and she was able to catch her breath. She was at this point when I came in. I worked with her and got her calm, but you could hear there was some liquid in her throat. We couldn't get it suctioned out because she would bite down hard on anything that went in her mouth. I started warning them that this was a bad situation because I knew she could not swallow well even under the best conditions in her current neurological state. At 10:00 PM, she started struggling again and I alerted everyone. I won't try and describe what I saw, it still brings tears to my eyes, but she was gasping for air and had a terrified look in her eyes. I could almost hear her begging me to help her. The rapid response team was activated and the code team was standing by as I continued to try and get her calmed down while giving her full oxygen flow by mask. She freaked completely if anyone else tried to get around her face but me. Her O2 levels were in the marginal OK range and we kept hoping she would come out of it. The decision was made to take her to the medical ICU since they had they had the capability to supply a higher flow oxygen. After we got there, she finally calmed down a little, but was breathing so shallow that she was just not getting enough oxygen. It had reached the point where we needed to either put her on the ventilator or risk potential brain damage (or worse) if her oxygen got too low and then tried to do it. I already knew in my heart that this decision was coming and there was no doubt in my mind that the answer was to do it now. I was asked by the attending doctor as well as the anesthesia doctor if I was sure this is what I wanted to do. They wanted to make sure I understood that Judi may never come off the ventilator. I know they were only doing their job, but I am so tired of the "system" trying to write her off. I know the heart and spirit in Judi and it just isn't her time to leave us. Perhaps that day will come, but I will know it if it does. For now, as I have said before, I ain't hearing no fat lady singing (or even warming up)!
Moving on. We got her on the ventilator and she obviously started doing better. She was still having difficulty maintaining her O2 levels in her blood stream at the appropriate level. This indicates that there is something wrong with her lungs. A chest x-ray taken then showed a significant portion of her lungs were "injured." That's a loose term here meaning that there is infection, fluid, etc. showing on the x-ray that is likely impacting her ability to get O2 in her blood stream. I was speechless when the pulmonology doctor showed me the X-rays. I asked how this was possible with all the previous x-rays being clear. How did we go from clear to being on a ventilator in a day? He was as perplexed as I was. There are a lot of theories (including some that are neurological in nature) and we will likely never know. If she had been eating/drinking through her mouth, the most likely cause would be having it go down the wrong pipe and get in her lungs. That is very common for people with swallowing difficulties in Judi's condition. It is also possible that she got a lot of secretions going down the back of her throat and aspirated it since she couldn't swallow.
So where are we now. Judi is in the medical ICU at MCG. She is on a ventilator and likely will be for a couple of weeks if things go well. She is getting a wide range of antibiotics to preclude/eliminate any infections in her lungs. Her lungs seem to be clearing a little, but the ventilator settings indicate she has a long way to go before her lungs work at the efficiency needed to get her off the ventilator. Her prognosis is good and there is nothing to indicate that she won't recover and get off the ventilator. It is now just waiting it out and letting her heal. If it shifts out beyond a couple weeks, I'll be faced with making a decision on whether to do a tracheotomy so they can get the tubes out of her throat. The trach is easier on her (no tubes running down her throat)while using the ventilator, but it is a long process to get off of it and Judi's history would indicate a long process if we have to go that route. We will obviously do what is right for her.
I expect to have a very busy and tough day tomorrow. The big issue now will be addressing her brain position issue and her current condition. Recall that her neurosurgeon was at the point on Friday that we do the surgery on Tuesday. She is obviously not in a condition for surgery now, but we'll have to develop a plan. I suspect we are going to come to the conclusion that the two issues are actually linked and if we are going to get her healthy, we will have to address both issues.
So how did we get from being admitted to the hospital for treatment of a UTI to the ICU on a ventilator? It still baffles me.
Here's what I do know. "Team Judi" WILL NOT give up no matter what! I consider all of you out there as members of this team. All of you have supported her in some way or the other. I could list hundreds of ways that we have received support and we have been truly humbled by the kindness shown by so many. I saw a lot of improvements in Judi before we had to get her prosthesis out. We are going to get her healthy and get her head closed up as soon as it is medically safe to do so. We will get her back into rehab(if necessary)and correct any issues that have developed from this hospital stay. Yes, we will likely have to start all over again in many areas. Jess and I have a lot of work to do, but we have done it before and we will do it again. Please don't give up or forget about her. I know that God has something special left for Judi to do in life and I am going to do everything I possibly can to see that she has the opportunity. Tomorrow is our wedding anniversary. 32 years ago, I promised God and the woman I love more than life itself that I would be here for her no matter what. That's what I intend to do. I hate that Jessica is having to go through this all over again. I made a commitment to her a long time ago as well when I decided to become a Dad. I will meet that one too! Make sure you enjoy time with those you love and remember to ask yourself what is truly important.
Keep us in your thoughts and prayers,
Steve
Monday, June 25, 2012
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
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
Wednesday, May 16, 2012
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
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
Monday, April 23, 2012
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
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
Wednesday, April 18, 2012
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
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
Sunday, April 15, 2012
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!!
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!!
Friday, April 13, 2012
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
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
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
Saturday, February 4, 2012
A Tough Month
I can hardly believe that another month has passed us by. I hope that everyone had a wonderful holiday season and had an opportunity to spend some quality time with friends and family. The holidays continue to be difficult for us, but it was better than last year and I suspect that it will continue to get better each year.
The last month has been a difficult one for us. Right after Christmas, Judi seemed to lose all of her energy almost over night. She went from being "wide open," to barely being able to stay awake. All she wanted to do was sleep. She also started to bob her head up and down almost constantly while she was awake. This was really a type of muscle tremor and she couldn't control it unless she focused directly on it. This eliminated any hope of doing neurofeedback with her due to the impact that the head motion has on the signal transmitted to the computer. She also started to rub her head constantly and started to run a low grade fever. There are no words to describe the feeling I had in the pit of my stomach at this time. These were exactly the same symptoms I saw when the infection surfaced in Judi's head the last time and it was almost exactly the same length of time since surgery (one day difference). I won't go into all the details of what it took to finally get her CT scan done, but there were no indications of infection or other issues going on in her head. I believe that was the first time I had relaxed since this started. This obviously left us with the task of trying to figure out what was causing the problem.
I would have to write an epistle to describe the ordeal this last month has been navigating the medical and insurance systems. We have ran numerous blood tests and although we have yet to find out what the issue is, we do know what it isn't. There are no indications of thyroid, diabetes or vitamin deficiencies (all of these were high probabilities based on her symptoms). My struggle now is where do we go from here. It is so hard to get feedback from Judi to help figure out what is really going on and the Drs say they have checked everything that would cause her symptoms. It is highly possible that it is a mental issue or just another one of those phases that she has to work through. The impending move may be contributing to the issue, but I would not have expected it to happen in such a step fashion if this was the case. I will most likely have them switch her back to the old medication to see if the new medication may actually be the issue. We shall see. She has been doing a bit better over the last week, but is still way off the norm.
We closed on the condo and it looks really great. We have a few things left to get done on the punch list and then we will start the painful process of moving. The long pole in the moving schedule now is getting caretaker coverage for Judi worked out. Now that Jessica will no longer be there to cover for me until Judi's caretaker gets there in the morning, a significant change will need to take place. Judi seems to really like the condo and I am looking forward to getting her a fresh start as well. Our new neighbors are extremely nice and have already offered to help in any way they can. Once we get all moved in, we will have to do some type of get together so that everyone can see the new digs and have an opportunity to see Judi again.
The move will mark a huge turning point for our little family. Jessica has essentially put her life on hold for the last three years to help her Mom and me through this ordeal. It is time for her to get on with her own life and see what the world has to offer her. She has had to mature way beyond her years and I can't begin to describe how proud I am of the woman she has become. Although I don't write about it often (it is not my place), this has been extremely hard on Jessica. I see the hurt in her eyes when she sees her Mom struggle and the longing to do the things that most Moms and daughters get to do. I will continue to remind everyone not to take those things for granted, they are more special than you realize. Thank you Jess for being who you are!!!!
Moving onward. I did get in touch with the speech specialist that worked with Gabby Giffords. She reviewed Judi's case and unfortunately Judi's type of injury is not really her specialty area. She specializes in left lobe injuries. She did provide me some names of people that she felt could help Judi if anyone could and allowed me to use her name to get through all the traditional impediments that slow down contact. Unfortunately, they are all left of the Mississippi. The top recommendation is at the Mayo Clinic, so Judi and I will be heading that way once we get the move done and our lives slow a bit.
Pool therapy continues to go well and Judi really looks forward to that time. I believe the social interaction is as beneficial as the physical results. I am looking hard at whether to continue the neurofeedback (NF) training. We have not trained in the last month due to the issues I described above and there have been no negative issues. In reality, I think she has been doing better without it. That is not because the NF is causing a problem, it is because I am able to do other things with her during the time that would typically be consumed by NF. I think it made a huge difference early on, but it seems to have reached a plateau. This is obviously a difficult decision because I want to give her every opportunity to recover. If I could find someone that is reasonably computer savvy to do it during the day, that would be a win-win.
I guess that hits the big stuff. I will be asking for help to move when that time comes. Many of you have volunteered and I am very grateful. I also need to thank Angela Macintosh for staying with Judi while I worked through all the condo closing issues. A huge thank you also goes out to Ginger Dickert for keeping my refrigerator full of awesome vittles. I am truly humbled by the continued support from so many. Please keep us in your prayers as we start yet another phase of our lives. As I am sure you have figured out, I have decided to keep using the blog until we get moved to the condo and then look at the switch to facebook.
Steve
The last month has been a difficult one for us. Right after Christmas, Judi seemed to lose all of her energy almost over night. She went from being "wide open," to barely being able to stay awake. All she wanted to do was sleep. She also started to bob her head up and down almost constantly while she was awake. This was really a type of muscle tremor and she couldn't control it unless she focused directly on it. This eliminated any hope of doing neurofeedback with her due to the impact that the head motion has on the signal transmitted to the computer. She also started to rub her head constantly and started to run a low grade fever. There are no words to describe the feeling I had in the pit of my stomach at this time. These were exactly the same symptoms I saw when the infection surfaced in Judi's head the last time and it was almost exactly the same length of time since surgery (one day difference). I won't go into all the details of what it took to finally get her CT scan done, but there were no indications of infection or other issues going on in her head. I believe that was the first time I had relaxed since this started. This obviously left us with the task of trying to figure out what was causing the problem.
I would have to write an epistle to describe the ordeal this last month has been navigating the medical and insurance systems. We have ran numerous blood tests and although we have yet to find out what the issue is, we do know what it isn't. There are no indications of thyroid, diabetes or vitamin deficiencies (all of these were high probabilities based on her symptoms). My struggle now is where do we go from here. It is so hard to get feedback from Judi to help figure out what is really going on and the Drs say they have checked everything that would cause her symptoms. It is highly possible that it is a mental issue or just another one of those phases that she has to work through. The impending move may be contributing to the issue, but I would not have expected it to happen in such a step fashion if this was the case. I will most likely have them switch her back to the old medication to see if the new medication may actually be the issue. We shall see. She has been doing a bit better over the last week, but is still way off the norm.
We closed on the condo and it looks really great. We have a few things left to get done on the punch list and then we will start the painful process of moving. The long pole in the moving schedule now is getting caretaker coverage for Judi worked out. Now that Jessica will no longer be there to cover for me until Judi's caretaker gets there in the morning, a significant change will need to take place. Judi seems to really like the condo and I am looking forward to getting her a fresh start as well. Our new neighbors are extremely nice and have already offered to help in any way they can. Once we get all moved in, we will have to do some type of get together so that everyone can see the new digs and have an opportunity to see Judi again.
The move will mark a huge turning point for our little family. Jessica has essentially put her life on hold for the last three years to help her Mom and me through this ordeal. It is time for her to get on with her own life and see what the world has to offer her. She has had to mature way beyond her years and I can't begin to describe how proud I am of the woman she has become. Although I don't write about it often (it is not my place), this has been extremely hard on Jessica. I see the hurt in her eyes when she sees her Mom struggle and the longing to do the things that most Moms and daughters get to do. I will continue to remind everyone not to take those things for granted, they are more special than you realize. Thank you Jess for being who you are!!!!
Moving onward. I did get in touch with the speech specialist that worked with Gabby Giffords. She reviewed Judi's case and unfortunately Judi's type of injury is not really her specialty area. She specializes in left lobe injuries. She did provide me some names of people that she felt could help Judi if anyone could and allowed me to use her name to get through all the traditional impediments that slow down contact. Unfortunately, they are all left of the Mississippi. The top recommendation is at the Mayo Clinic, so Judi and I will be heading that way once we get the move done and our lives slow a bit.
Pool therapy continues to go well and Judi really looks forward to that time. I believe the social interaction is as beneficial as the physical results. I am looking hard at whether to continue the neurofeedback (NF) training. We have not trained in the last month due to the issues I described above and there have been no negative issues. In reality, I think she has been doing better without it. That is not because the NF is causing a problem, it is because I am able to do other things with her during the time that would typically be consumed by NF. I think it made a huge difference early on, but it seems to have reached a plateau. This is obviously a difficult decision because I want to give her every opportunity to recover. If I could find someone that is reasonably computer savvy to do it during the day, that would be a win-win.
I guess that hits the big stuff. I will be asking for help to move when that time comes. Many of you have volunteered and I am very grateful. I also need to thank Angela Macintosh for staying with Judi while I worked through all the condo closing issues. A huge thank you also goes out to Ginger Dickert for keeping my refrigerator full of awesome vittles. I am truly humbled by the continued support from so many. Please keep us in your prayers as we start yet another phase of our lives. As I am sure you have figured out, I have decided to keep using the blog until we get moved to the condo and then look at the switch to facebook.
Steve
Saturday, December 24, 2011
Merry Christmas
As you can see, Judi continues to get stronger and appears to grow more aware on a daily basis. We were able to complete the transition from her previous anti-seizure medication to a new drug that has fewer side effects (long and short term). There was a definite improvement in her awareness directly associated with this change.
Judi continues to enjoy the water therapy and it seems to be helping her muscle development and strength a great deal. The massage therapist continues to make significant progress with her as well. She not only works with Judi, but shows me the things I can do to work with her at home. We continue to stand her in her frame at home and the 5'9" hugs continue at every opportunity. The neuro feedback training continues although it was slowed down a bit when we transitioned to the new drug. I am on a new therapy mission though. After all of the recent doctor appointments and tests, it is still a mystery why Judi isn't talking. I am trying to find a language specialist and potentially a music therapist that specializes in brain injuries. I have never felt like traditional speech therapy met Judi's needs. I am looking for someone that can help her more with the mechanics of learning to speak again. There are many of them out there, I just have to find someone that is close enough to be able to get her to enough sessions to be effective. Music therapy has also shown results with people with brain injuries as well since it utilizes a different set of pathways in many cases than traditional speech. The key component gets them to hum and sing tunes they are familiar with using various techniques. This was one of the techniques used to help Gabby Giffords relearn how to talk. Again, the difficulty will be to find someone that is close enough to be effective. If any of you know of someone, please let me know.
We did sign the contract on the condo. It is being finished as we speak and we should close around the middle of January. I am excited and a bit sad as well. I am happy to be moving forward and provide Judi with an improved quality of life, but there are many Wilkerson memories associated with our existing home. We have not decided whether to sell our existing home or to rent it until the economy gets a bit better. I have lots of volunteers to help us move and I plan to take them up on the offer. More to follow on the condo when we get it closer to being finished.
I wanted to let everyone know that we will most likely stop the blog after the first of the year and go to a facebook page instead. Facebook seems to be a little more user friendly for shorter entries than the blog. This will let us make comments quickly when they seem appropriate as opposed to sort of "saving up" for a blog entry. I still want to make the information available since I know a lot of people are still following the blog. I will have to learn how to use facebook (never used it before), but Jess is an expert and she says I am trainable! I'll give everyone the scoop once we have it set up.
Merry Christmas
Steve, Judi and Jess
Monday, November 14, 2011
Treadin' Water
Lots of things to update on since the last post. As you can see we finally got Judi enrolled in the Adaptive Aquatics program and she loves it. I am not sure which aspect she enjoys the most: working in the pool, hanging out with others or the fact that the water is about 90 degrees. I can only imagine how good that must feel on her muscles after all she has gone through. Probably the biggest news from this activity is that we have been able to get her to consistently "cycle" with BOTH legs in the water. I have been impressed with what the team is able to do. They put a small wrap around float on her left thigh and then an ankle weight on her left ankle. What this does is keep her knee bent. It takes much less energy to move a muscle/limb in the water and "wah-la" she started pumping it the first time she tried after we showed her how. She almost started crying when she realized what she was doing. I of course was totally composed and shouting "I told you that you could do it!"Those of you that know our Judi well know how
quickly she likes to be the expert on everything she attempts and would not be surprised to see her go from holding on for dear life the first week to a big "thumbs up" just a week later (not the greatest picture but I was on the move). The lady working with her here is also a nurse so they hit it off big time.Judi continues to get physically an mentally stronger. She enjoys free standing with me holding her up more and more. It is nice to get a 5'9" hug again. At first she could only do it for a few seconds, but now tolerates a minute or so before her legs start to give out. Her muscle tone is coming back in her legs as well and she is slowly but surely losing the "chicken legs." She is also working with a very talented massage therapist to help loosen her muscles in addition to the water therapy. We have seen a significant improvement in her head/neck from these efforts.
We have had multiple Dr's appointments over the last few weeks. These were primarily 6 month follow ups since her surgery in April. Her brain injury specialist left Walton in the spring and went to the Shepherd Center in Atlanta. We decided to stay with him and they agreed to keep Judi as a patient. It is an awesome facility and her check up went very well. He was impressed with her progress and validated for us that she was not missing any new therapies that would apply to her injury that might be available there and not at Walton. Her neurosurgeon appointment and associated CT scan went well. Her brain continues to reposition itself in her skull and everything looks fine. He too commented on how well she was doing and I thought he would fall out when she reached up and shook his hand when he came in her room. He was also amazed when she was able to work simple math problems. Her neurologist appointment and new EEG also went well. The EEG still shows a lot of slowing of the brain function where the majority of her damage was, but it has lessened significantly since the last EEG. Not sure if this is neurofeedback, healing, tough as nails Judi or all of the above. We will continue all of them! We also are trying to change her anti seizure medication. The medication she is on has a lot of potential side effects and there is a new drug I have been researching for a while that would seem to be perfect for her with much less likelihood of side effects. It should also be a lot less "mind numbing" than her current medication. Unfortunately all of them have a bit of this effect (that's how they prevent the seizures ).
I did finally get her out to the bowling alley to see her old pals on the bowling team. Thanx to Deborah Turner for helping me get that worked out. All of the ladies were awesome to her and she clearly enjoyed the outing. I will definitely take her back soon. She was lit up all night after that trip. I think it does her a tremendous amount of good to get out of the house and back into environments that bring back good memories.
One of her younger sisters (Kelly) from up north also flew in and spent a long weekend with us. It was awesome to see her again and it was obvious that it did both of them good. I enjoyed getting to talk about the "old days" and it brought back some wonderful memories. As we have gone on this journey, it has become more and more clear how important it is to spend time with family and enjoy every minute that you can. You never know what the next day will bring.
We also had Judi evaluated for what I call a "gaze computer." I think the proper description is speech generation device. It is basically a computer that picks of the position of the users eyes to control selections on the screen that generate phrases, words, requests based on what the user selects. Judi did well with it, but I noticed that she reached for the boxes as well and I believe she may be able to use the touch screen version which is a little less sensitive (and therefore less prone to mistakes). We are evaluating the best path to take since the systems are very expensive and we want to keep the pressure on her to talk. We are a little afraid that if she gets comfortable using this device to communicate, she may stop trying as hard to talk. More to follow on this later.
Good news on the caretaker front. The new caretaker has finally started letting her hair down and I think she is going to be a very good fit. She takes her job very seriously and the two of them are starting to bond pretty well. She is a little high maintenance, but as long as she is good to and for Judi, I can handle it.
I guess one last piece of news that will have a big impact on us as well. We are close to signing a contract on a condo/town home. It is actually a place we looked at before Judi got hurt, so I know she likes them. It is almost 1900 ft2 and is all on one floor with a fully open floor plan. We are negotiating what it will cost to have some modifications made that make it fully accessible for Judi (roll in shower, wheelchair accessible sink, etc.) and everything looks favorable. I just can't keep up everything with our current home and it is more than we need today. Having all of the maintenance (grounds, exterior, etc.) covered is very appealing to me now that time is such a precious commodity. I think the new neighborhood will be good for Judi to meet some new friends that only know her for who she is today. I know many of her previous friends tell me they find it difficult to see Judi as she is today because they remember the "old Judi" so they don't come around. I personally think that is a cop out, but that is a decision that each person makes for themselves. As the old saying goes, the right thing and the hard thing are often the same.
Well, I think that is most of the big stuff for the last few weeks. Please keep us in your prayers - we both need them. I will admit I am struggling harder and harder to juggle everything these days. The better Judi gets, the more attention she needs and unfortunately work has an increased demand as well. I am struggling to get everything done there as well. Hopefully we will reach a point soon where I can slow down a little and catch up. So if you can, say a little extra prayer, we would appreciate it. Stop by and see us if you get a chance.
God Bless,
Steve
Sunday, October 9, 2011
Rolling Along
Greetings to all!
It has been a while since I posted last, but there really have been no major changes since then. I thought you might enjoy my smilin' gal sporting her new crop of hair. I can't believe she doesn't have a head full of gray ones after all she has been through (I have enough for both of us).
Judi continues to grow physically stronger every day, but she is still unable to control her left side. Everything remains functional (reflexes, stimulus, etc.) so we continue to work at it in hopes that her brain will recognize them again and regain control.
We are moving towards one more relatively minor surgery (if there is such a thing) on her right thumb. The ligament that controls the upper joint in her right thumb was damaged in the accident which prevents her from straightening out her thumb (some of you may recall that this was the only cut she had as a result of the accident). The upper section of her thumb stays tucked down and it has become a significant impediment to her as she has progressed through rehab. We have a couple of options. One is to remove a ligament from another finger or toe and reconnect it there. That is a big surgery and requires extensive rehab. The orthopaedist, occupational therapists and I all agree that this is really not a good option for Judi in her current condition. The other option is to fuse the joint so that the upper section remains in a fixed position. Studies indicate that the upper section remains in a slightly bent position 90% of the time. We had a splint on her thumb for several weeks that had it in the same position it would be fused in and it made a big difference for her. She will have pins in her thumb for 6-8 weeks while the bones fuse and then she should be good to go. I am sure it will be an interesting holiday period, but this should really increase her dexterity.
Speech remains about the same. Very vocal, but still not quit able to put the words together. Occupational and physical therapy remain the same as well. She is being discharged from Outpatient Therapy at the end of this month. I hate that, but the therapists indicate that there is nothing they are doing now that takes a skilled therapist to perform. As much as I hate to admit it, I agree with that assessment. It does not mean she isn't doing well, it only means that we can do everything they are doing at home. She has the opportunity to go back at any time when this position changes. We can certainly do the therapy that she needs, but she loses one thing that I believe is every bit as important (if not more so) and that is the social interaction. She loves to be in the middle of conversations and enjoys interacting with others. I need to get her out of the house and interfacing with others as much as possible.
I am just going to say this from the heart and hope that everyone understands. There are a lot of you out there that are following the blog and care a great deal for Judi. I know it is hard for you to see her in the condition she is in. I also know that everyone's lives are getting busier and busier, but Judi needs your help to continue getting better. If you can just come by and see her for a few minutes, do it. If you can invite her to a little get together, let us know and her caretaker or I can come with her to take care of any needs she has. If she can come to bowling one evening and not create a big distraction, please let me know. I believe that it is one of these interactions that will ultimately cause her to come back to us. Judi has helped a lot of people over the years and now she needs your help. You might be surprised at her ability to interact.
I think that hits all the big stuff. I'll update as any significant changes occur. I ask that you continue to pray for us as we start down yet a new path in Judi's recovery. Thanx for everything!
Steve
e-mail: swilk@knology.net
cell: 706-830-8973
It has been a while since I posted last, but there really have been no major changes since then. I thought you might enjoy my smilin' gal sporting her new crop of hair. I can't believe she doesn't have a head full of gray ones after all she has been through (I have enough for both of us).
Judi continues to grow physically stronger every day, but she is still unable to control her left side. Everything remains functional (reflexes, stimulus, etc.) so we continue to work at it in hopes that her brain will recognize them again and regain control.
We are moving towards one more relatively minor surgery (if there is such a thing) on her right thumb. The ligament that controls the upper joint in her right thumb was damaged in the accident which prevents her from straightening out her thumb (some of you may recall that this was the only cut she had as a result of the accident). The upper section of her thumb stays tucked down and it has become a significant impediment to her as she has progressed through rehab. We have a couple of options. One is to remove a ligament from another finger or toe and reconnect it there. That is a big surgery and requires extensive rehab. The orthopaedist, occupational therapists and I all agree that this is really not a good option for Judi in her current condition. The other option is to fuse the joint so that the upper section remains in a fixed position. Studies indicate that the upper section remains in a slightly bent position 90% of the time. We had a splint on her thumb for several weeks that had it in the same position it would be fused in and it made a big difference for her. She will have pins in her thumb for 6-8 weeks while the bones fuse and then she should be good to go. I am sure it will be an interesting holiday period, but this should really increase her dexterity.
Speech remains about the same. Very vocal, but still not quit able to put the words together. Occupational and physical therapy remain the same as well. She is being discharged from Outpatient Therapy at the end of this month. I hate that, but the therapists indicate that there is nothing they are doing now that takes a skilled therapist to perform. As much as I hate to admit it, I agree with that assessment. It does not mean she isn't doing well, it only means that we can do everything they are doing at home. She has the opportunity to go back at any time when this position changes. We can certainly do the therapy that she needs, but she loses one thing that I believe is every bit as important (if not more so) and that is the social interaction. She loves to be in the middle of conversations and enjoys interacting with others. I need to get her out of the house and interfacing with others as much as possible.
I am just going to say this from the heart and hope that everyone understands. There are a lot of you out there that are following the blog and care a great deal for Judi. I know it is hard for you to see her in the condition she is in. I also know that everyone's lives are getting busier and busier, but Judi needs your help to continue getting better. If you can just come by and see her for a few minutes, do it. If you can invite her to a little get together, let us know and her caretaker or I can come with her to take care of any needs she has. If she can come to bowling one evening and not create a big distraction, please let me know. I believe that it is one of these interactions that will ultimately cause her to come back to us. Judi has helped a lot of people over the years and now she needs your help. You might be surprised at her ability to interact.
We did have one major issue to deal with over the last few weeks. Judi's caretaker who has been with us since she came home from the hospital had to leave due to medical issues. She has a new caretaker who is very technically capable, but her personality is not quite as bubbly as her predecessor. It looks like Judi and her are warming up to each other pretty well. This is another strain on that social interaction piece I mentioned before. I have been spending a lot of time bringing her up to speed on the little things that make a difference in Judi's day to day living.
I think that hits all the big stuff. I'll update as any significant changes occur. I ask that you continue to pray for us as we start down yet a new path in Judi's recovery. Thanx for everything!
Steve
e-mail: swilk@knology.net
cell: 706-830-8973
Monday, September 12, 2011
Day by Day
I believe that Judi has started to reconcile the anger she has been carrying for a while. She still has days when you can tell she is mad at the world, but they are becoming less frequent. She also tries hard to control her negative attitude when it is pointed out to her. We often have some interesting discussions when she lets the "alien" out. It is interesting to note that she is normally very receptive to communicating with her signs when we discuss this topic. It is my hope that she will get more and more control as she continues to improve. Again, all of these things are very common for people suffering a traumatic brain injury.
One of the biggest news items since the last post was a visit from Judi's dad and older sister over the Labor Day weekend. When her dad walked in, it was the second largest display of emotion I have seen from Judi since the accident. She was so excited when he came in that I thought for sure she was going to break down and cry. She also reached out and gave him and her sister a big hug. I was praying the whole time that she would talk to him, but she never quite got it out. It was a good visit and I think it did everyone some good. The emotional display is a VERY good sign since it involves multiple brain functions at multiple levels to process this level of emotional response. In case you were wondering, the biggest display of emotion was when I brought her home for the first time after the accident.
Rehab continues to go well and she is showing improvement in all areas. The largest improvement continues to be in the physical therapy arena. She is getting significantly stronger and it is good to see the muscle growth/tone in her legs continue to improve. When I transfer her between locations, she usually wants to stand for a short period of time with me supporting her. She has started to put her arm around my waist and I give her a big hug while we stand there. I can't describe how good it is to see her standing tall with her head held up and a beautiful smile on her face. We continue to hold out hope that she will recover use of her left leg soon. Occupational therapy continues at about the same pace as before. Some days she is totally into it, others she just really has little interest. On the off days we continue to focus on restoring the range of motion on the right side and stretching the left side. Speech therapy is a bit hit or miss lately. We are integrating the IPad into those sessions as well as at home. She is starting to write her name and some simple words periodically. It is still not on a regular basis, but she is getting better and better at it. One of the issues I am trying to resolve is whether her vision is impacting her or not. Before the accident, she needed reading glasses to read and do close up tasks (keyboard use, starting IVs, etc.). I put her glasses on her sometimes when she is doing work on the IPad or other media where she would probably have needed them in the past, but I can't tell if they are really helping or not. She will take them off when they seem to bother her. She is still trying hard to talk and I will continue to say it is just a matter of time before she is able to master that skill again.
She is a very "BUSY" lady again. I mentioned this once before, but she gets on a roll some days and is incapable of being still or not touching/messing with anything within her reach. Again, this is a good sign that her inquisitiveness is growing stronger, but it keeps me on my toes. I encourage her to experiment and it has helped her continue to gain confidence in doing things on her own. She will drink out of her cup on her own and is doing a pretty good job eating on her own as well. I have been feeding her a bit more than usual because we have been slowly moving her diet back to a more coarse texture to encourage her to chew. She is starting to use her tongue to move food to her teeth and this is exactly what we are looking for. I feed her to make sure she doesn't get too much going at one time and choke. When she feeds herself, her mission appears to be "get as much on a spoon as possible." I will mention that she doesn't like to be fed (wants to do it herself) unless you explain to her why you are ding it. Again, some good signs.
Neuro feedback (NF) continues to be my focus at home. We are actively training her on all of the key sites in the brain with the exception of the pre-frontal lobe (right above your eyes). I have seen an improvement in her awareness and activity level as we opened the door on the new sites. Once she has been stable here for a while, we'll give the pre-frontal lobes another try. Every time we tried to train here in the past, she ultimately had a seizure within 24 hrs. There is obviously a lot of improvement that can be made here, but we want to do it without increasing the risk of seizures too much. We will probably do another full EEG soon to see how it compares to the baseline that was done right after she came home from the hospital. It may provide some insight on the training strategy going forward.
We do have a massage therapist working with her now and I believe that will provide a lot of relief for her in specific areas that rehab doesn't focus on due to the global issues they are addressing. The first focus area is her neck in the area of rotating her head side to side. She does well with the up and down, but still has difficulty rotating her head. We also have her signed up for an aquatic therapy program at the YMCA which she will start in the next couple of weeks. The main issue there is integrating the schedules for all the activities. I am taking her to an orthopaedic specialist tomorrow to look at her right hand thumb. She is unable to get full range of motion on that thumb and it is starting to have a significant impact on her ability to perform tasks with that hand. I had it looked at while she was in the hospital and the surgeons assured me then that it would not require surgery to correct. A fact few probably know is that the knuckle on her thumb was the only cut she had on her body from the accident. Getting this corrected will go a long way in her recovery.
I think that pretty much covers where we are today. I am doing everything I can to stimulate that fire in Judi and so far, she continues to get better on multiple fronts. Several of you have indicated that I look tired these days and that you are concerned. I greatly appreciate the concern and kind words (and yes I am tired). I am working on some additional help to allow me some additional down time. Judi is at a point where she needs the extra attention and I am going to do my best to give her the best chance possible to recover. Once she gets over the "hump," hopefully she will need less full time attention and things will slow back down. Feel free to come and see us. Judi loves company and it is always good to see old friends.
One of the biggest news items since the last post was a visit from Judi's dad and older sister over the Labor Day weekend. When her dad walked in, it was the second largest display of emotion I have seen from Judi since the accident. She was so excited when he came in that I thought for sure she was going to break down and cry. She also reached out and gave him and her sister a big hug. I was praying the whole time that she would talk to him, but she never quite got it out. It was a good visit and I think it did everyone some good. The emotional display is a VERY good sign since it involves multiple brain functions at multiple levels to process this level of emotional response. In case you were wondering, the biggest display of emotion was when I brought her home for the first time after the accident.
Rehab continues to go well and she is showing improvement in all areas. The largest improvement continues to be in the physical therapy arena. She is getting significantly stronger and it is good to see the muscle growth/tone in her legs continue to improve. When I transfer her between locations, she usually wants to stand for a short period of time with me supporting her. She has started to put her arm around my waist and I give her a big hug while we stand there. I can't describe how good it is to see her standing tall with her head held up and a beautiful smile on her face. We continue to hold out hope that she will recover use of her left leg soon. Occupational therapy continues at about the same pace as before. Some days she is totally into it, others she just really has little interest. On the off days we continue to focus on restoring the range of motion on the right side and stretching the left side. Speech therapy is a bit hit or miss lately. We are integrating the IPad into those sessions as well as at home. She is starting to write her name and some simple words periodically. It is still not on a regular basis, but she is getting better and better at it. One of the issues I am trying to resolve is whether her vision is impacting her or not. Before the accident, she needed reading glasses to read and do close up tasks (keyboard use, starting IVs, etc.). I put her glasses on her sometimes when she is doing work on the IPad or other media where she would probably have needed them in the past, but I can't tell if they are really helping or not. She will take them off when they seem to bother her. She is still trying hard to talk and I will continue to say it is just a matter of time before she is able to master that skill again.
She is a very "BUSY" lady again. I mentioned this once before, but she gets on a roll some days and is incapable of being still or not touching/messing with anything within her reach. Again, this is a good sign that her inquisitiveness is growing stronger, but it keeps me on my toes. I encourage her to experiment and it has helped her continue to gain confidence in doing things on her own. She will drink out of her cup on her own and is doing a pretty good job eating on her own as well. I have been feeding her a bit more than usual because we have been slowly moving her diet back to a more coarse texture to encourage her to chew. She is starting to use her tongue to move food to her teeth and this is exactly what we are looking for. I feed her to make sure she doesn't get too much going at one time and choke. When she feeds herself, her mission appears to be "get as much on a spoon as possible." I will mention that she doesn't like to be fed (wants to do it herself) unless you explain to her why you are ding it. Again, some good signs.
Neuro feedback (NF) continues to be my focus at home. We are actively training her on all of the key sites in the brain with the exception of the pre-frontal lobe (right above your eyes). I have seen an improvement in her awareness and activity level as we opened the door on the new sites. Once she has been stable here for a while, we'll give the pre-frontal lobes another try. Every time we tried to train here in the past, she ultimately had a seizure within 24 hrs. There is obviously a lot of improvement that can be made here, but we want to do it without increasing the risk of seizures too much. We will probably do another full EEG soon to see how it compares to the baseline that was done right after she came home from the hospital. It may provide some insight on the training strategy going forward.
We do have a massage therapist working with her now and I believe that will provide a lot of relief for her in specific areas that rehab doesn't focus on due to the global issues they are addressing. The first focus area is her neck in the area of rotating her head side to side. She does well with the up and down, but still has difficulty rotating her head. We also have her signed up for an aquatic therapy program at the YMCA which she will start in the next couple of weeks. The main issue there is integrating the schedules for all the activities. I am taking her to an orthopaedic specialist tomorrow to look at her right hand thumb. She is unable to get full range of motion on that thumb and it is starting to have a significant impact on her ability to perform tasks with that hand. I had it looked at while she was in the hospital and the surgeons assured me then that it would not require surgery to correct. A fact few probably know is that the knuckle on her thumb was the only cut she had on her body from the accident. Getting this corrected will go a long way in her recovery.
I think that pretty much covers where we are today. I am doing everything I can to stimulate that fire in Judi and so far, she continues to get better on multiple fronts. Several of you have indicated that I look tired these days and that you are concerned. I greatly appreciate the concern and kind words (and yes I am tired). I am working on some additional help to allow me some additional down time. Judi is at a point where she needs the extra attention and I am going to do my best to give her the best chance possible to recover. Once she gets over the "hump," hopefully she will need less full time attention and things will slow back down. Feel free to come and see us. Judi loves company and it is always good to see old friends.
Steve
One last thing, please take a few minutes to remember the anniversary of 9/11 and all of the brave lives that were lost that day. Those of you that know me well, know that the red/white/blue runs strong in these veins and I will never forget the day our country was attacked by a group of cowards. Please don't forget the innocent men, women and children that lost their lives that day and the hundreds of heroes that died saving countless others.
Monday, August 8, 2011
Angry Girl??
I know the title is a bit different than what you usually hear from me, but I believe that I have a very angry woman on my hands these days. It is difficult to know for sure due to the communication gap that exists, but all of her actions and body language are those of a lady that is ticked off at the world. I am told this is not an uncommon phase for people to go through during their recovery. The theory is that as Judi's awareness increases, the reality of her situation is becoming clearer and she is angry that this has happened to her. I have to admit that I can't blame her (I have already gone through it myself). I just hope that I survive it!! Those of you that knew Judi well will understand why I say that. I can also assure you with absolute certainty that the "old Judi" still resides inside that pretty head. Once she has made up her mind she is not going to do something, the battle of wills begins and it is all I can do to maintain my cool at times. It is difficult to give all that you have and maintain a positive attitude when it is a battle at every step. Hopefully it will be short lived and we can continue moving forward.
Outpatient therapy continues to go reasonably well. She is getting significantly stronger physically. She stands almost every day either at home or at Walton and usually holds her head up the entire time (huge accomplishment). She is lifting weights with her right leg and we continue to do everything we can to stimulate the left leg to get it to respond. She is able to activate the muscles in her left every once in a while, but nothing that is repeatable. When we transfer her to/from her wheelchair she pushes up and essentially stands on her own as you move her to the appropriate location. That helps her confidence and muscle tone as well. I have had her stand for short periods like that with my arms around her waist and that always brings a smile to two faces! Working hard on building her core muscles and balance by sitting on the edge of the mat. She has gone up to a minute sitting by herself without any external support (sounds small, but REALLY big improvement). OT goes reasonably well. Attitude has a lot to do with this area of therapy and right now we are struggling a bit. On those days when she has her fanny on her shoulders, they do a lot of stretching exercises which help her great deal. Her reaching and eye/hand coordination are getting better and she does well when she wants to. Speech therapy is always hit or miss depending on her energy level and the attitude for the day. A couple of Fridays back she had the best ST session I believe she has ever had. She was using all her signs, answering questions about the past and cognitive scenarios and making sounds left and right trying to talk. Last Friday she didn't want to participate hardly at all. We did have some success using the IPad. I was able to get her to do some simple subtraction and answer them correctly. If you put all that together, Judi is continuing to do very well when she doesn't let the attitude get in the way. She is clearly very alert behind the input/output issues. I try to put myself in her shoes when she tries my patience and most of the time I can deal with it. There are times though that I have to sit and talk with her about her behavior and most of the time she responds reasonably well (for Judi).
NF has consumed the majority of our free time lately. We have made several trips to NC and have started training her daily on sights that should start to "wake her up" and stimulate the speech center as well. This "awakening" may also be fueling some of the attitude as Judi's frustration level with not being able to communicate gets higher. She doesn't like the electrodes on her head, so I have to sit with her through the entire session or she will pull at least one of them off. I used to be able to do a little multi-tasking while she was training so my discretionary time has become even shorter.
She is doing an OK job at eating these days. For some reason, she starts out great and then about half way through her meal, she starts going to sleep and stops dead in her tracks. She will usually eat if I feed her then, but she is done doing it for herself at that point. She is not really sleeping because as soon as I put everything away, the head pops up and she is focused on whatever is on TV (that's when I try to get her NF in). I don't try to force her to eat and if she doesn't get enough, I give her some supplemental feeding through her PEG tube. I always hate to do that because I want to get rid of that darn thing one of these days, but for now it gives us a very convenient backup for eating and for her medications.
The heat has been tough on her and I have not been able to get her outside as much as I like to. Hopefully we will get some relief soon and we can continue to explore new things. I plan to take her to the bowling alley sometime in the next few weeks. I was talking to the physical therapist last week and he indicated that they had a stand that they sit in the lane where she can aim the ball and then push it off. I have to talk to the bowling alley to see what it takes to use that. I think Judi would have a blast doing that since she enjoyed bowling so much. She told me last week that she would like to do that and told the therapist she was a good bowler when asked. I know some of her bowling buddies follow the blog so please let me know if you have any insight here.
I think that pretty much sums up where we are today. Sorry for the long time between posts, but I must admit I am pretty much strung out these days. The better Judi gets, the more attention she needs and I plan to do everything I can to keep her moving in the right direction. I hope that need will peak and then start to go the other way as she becomes able to do more for herself. I have got to figure out a way to get a little more rest than I am getting these days though. My body is telling me it is tired. I am hoping to get a CNA or two right out of school to help me some on the weekends and potentially in the evenings so I can catch up (and slow down) a bit. Using an agency for that just becomes cost prohibitive in a hurry. If any of you know of someone with that type of background looking to work some, please let me know. Jess is doing all she can to help, but with school starting back she will be wide open there as well.
I appreciate the continued thoughts and prayers from everyone. We are living proof of the power of prayer. I would ask that you include a couple other families in your prayers as well this week. Please include Dwain and Brenda Mcmullin and Bill, Lexi and Haley Van Pelt. Both families continue to set the example for the rest of us to follow for maintaining their faith in the shadow of adversity. It was great to see that smiling face of Haley's last week at rehab. Feel free to stop by and see us if you get the chance. Don't let the talk of Judi's attitude scare you away. You might just be the medicine she needs.
Steve
Outpatient therapy continues to go reasonably well. She is getting significantly stronger physically. She stands almost every day either at home or at Walton and usually holds her head up the entire time (huge accomplishment). She is lifting weights with her right leg and we continue to do everything we can to stimulate the left leg to get it to respond. She is able to activate the muscles in her left every once in a while, but nothing that is repeatable. When we transfer her to/from her wheelchair she pushes up and essentially stands on her own as you move her to the appropriate location. That helps her confidence and muscle tone as well. I have had her stand for short periods like that with my arms around her waist and that always brings a smile to two faces! Working hard on building her core muscles and balance by sitting on the edge of the mat. She has gone up to a minute sitting by herself without any external support (sounds small, but REALLY big improvement). OT goes reasonably well. Attitude has a lot to do with this area of therapy and right now we are struggling a bit. On those days when she has her fanny on her shoulders, they do a lot of stretching exercises which help her great deal. Her reaching and eye/hand coordination are getting better and she does well when she wants to. Speech therapy is always hit or miss depending on her energy level and the attitude for the day. A couple of Fridays back she had the best ST session I believe she has ever had. She was using all her signs, answering questions about the past and cognitive scenarios and making sounds left and right trying to talk. Last Friday she didn't want to participate hardly at all. We did have some success using the IPad. I was able to get her to do some simple subtraction and answer them correctly. If you put all that together, Judi is continuing to do very well when she doesn't let the attitude get in the way. She is clearly very alert behind the input/output issues. I try to put myself in her shoes when she tries my patience and most of the time I can deal with it. There are times though that I have to sit and talk with her about her behavior and most of the time she responds reasonably well (for Judi).
NF has consumed the majority of our free time lately. We have made several trips to NC and have started training her daily on sights that should start to "wake her up" and stimulate the speech center as well. This "awakening" may also be fueling some of the attitude as Judi's frustration level with not being able to communicate gets higher. She doesn't like the electrodes on her head, so I have to sit with her through the entire session or she will pull at least one of them off. I used to be able to do a little multi-tasking while she was training so my discretionary time has become even shorter.
She is doing an OK job at eating these days. For some reason, she starts out great and then about half way through her meal, she starts going to sleep and stops dead in her tracks. She will usually eat if I feed her then, but she is done doing it for herself at that point. She is not really sleeping because as soon as I put everything away, the head pops up and she is focused on whatever is on TV (that's when I try to get her NF in). I don't try to force her to eat and if she doesn't get enough, I give her some supplemental feeding through her PEG tube. I always hate to do that because I want to get rid of that darn thing one of these days, but for now it gives us a very convenient backup for eating and for her medications.
The heat has been tough on her and I have not been able to get her outside as much as I like to. Hopefully we will get some relief soon and we can continue to explore new things. I plan to take her to the bowling alley sometime in the next few weeks. I was talking to the physical therapist last week and he indicated that they had a stand that they sit in the lane where she can aim the ball and then push it off. I have to talk to the bowling alley to see what it takes to use that. I think Judi would have a blast doing that since she enjoyed bowling so much. She told me last week that she would like to do that and told the therapist she was a good bowler when asked. I know some of her bowling buddies follow the blog so please let me know if you have any insight here.
I think that pretty much sums up where we are today. Sorry for the long time between posts, but I must admit I am pretty much strung out these days. The better Judi gets, the more attention she needs and I plan to do everything I can to keep her moving in the right direction. I hope that need will peak and then start to go the other way as she becomes able to do more for herself. I have got to figure out a way to get a little more rest than I am getting these days though. My body is telling me it is tired. I am hoping to get a CNA or two right out of school to help me some on the weekends and potentially in the evenings so I can catch up (and slow down) a bit. Using an agency for that just becomes cost prohibitive in a hurry. If any of you know of someone with that type of background looking to work some, please let me know. Jess is doing all she can to help, but with school starting back she will be wide open there as well.
I appreciate the continued thoughts and prayers from everyone. We are living proof of the power of prayer. I would ask that you include a couple other families in your prayers as well this week. Please include Dwain and Brenda Mcmullin and Bill, Lexi and Haley Van Pelt. Both families continue to set the example for the rest of us to follow for maintaining their faith in the shadow of adversity. It was great to see that smiling face of Haley's last week at rehab. Feel free to stop by and see us if you get the chance. Don't let the talk of Judi's attitude scare you away. You might just be the medicine she needs.
Steve
Monday, July 11, 2011
Has it been that long?
I know it has been a long time between posts, but the reality is that not much has changed since the last post. I am getting busier and busier every day. I think I mentioned in a previous post that the better Judi gets, the more time I have to spend with her to keep her going and meet her needs. Not getting much sleep these days, but hopefully we'll be over the hump before too much longer.
We did celebrate our 31st wedding anniversary on July 2 and it was a much better one than last year. It was still a very difficult day for me, but I continue to do my best to maintain the attitude that each next year will be better than the last. I am still very thankful for my time with Judi and we do our best to take advantage of the time God has given us together.
Judi continues to do well in therapy. We have started standing her up without the use of the standing frame when the male Physical Therapist works with her and I am there. We support her on both sides and let her stand. She really seems to enjoy being able to do this, but it takes a lot out of her and she only lasts a short period of time. As you can imagine, this puts a significant load on all her muscles and joints and is great exercise to try and reactivate her left leg. We did get her up in the walking harness today (11/13) and she really seemed to enjoy it. She kept her head up and tried to take a step, but the left leg still did not respond. We'll keep working this and hopefully it will come to her.
She continues to work with the iPad and even wrote my name a couple of weeks ago. There are a lot of applications that interest her and she has always been interested in technology.
Continuing to feed herself and the eye/hand coordination is getting better. She will brush her teeth sometimes, but has to be in the right mood. We have to watch her close here to ensure that the toothbrush doesn't get too far back and that she doesn't chew on it. We also use some swabs with a mouth wash on it to help clean her teeth and she really likes to do that herself. These are all good signs and we continue to encourage her to do anything she can for herself.
She is definitely saying a few words every now and then. I believe she is almost there and the words that come out are those that are a reflex where she doesn't have to think much about them. I can't wait until she can put it all together here since it opens so many new doors for her.
Her awareness continues to improve and her ability to interact is improving as well. She is starting to use sign language again. We had made a lot of progress before the infection and she is just starting to pick that up again. It is good to see her thinking about what she wants to say and then converting it to the appropriate sign. This is also indicative of an improving comprehension of tasks and concepts. She has also started reaching out for stuff in the grocery store and looking hard at the packages. I think she is trying to read them and it stimulates memories for her. She also loves to open the freezer doors to see how the doors work and what might be inside. As you can imagine, it takes me a lot longer at the store these days, but if it helps her learn, I'll take whatever time it takes.
We are continuing the neurofeedback (NF) and have started training new sites to bring her brain functions back to a stable and active state. We are trying to get to the point where we can focus on the speech center and hopefully that will be enough to help her begin talking again. I desperately need to have a good feedback mechanism from her so that we can focus her therapy as well respond more effectively to her needs. I am always worried that she needs something that I am not aware of because of this gap.
We have definitely entered the defiant stage and some days that girl tests every bit of patience I have! Unfortunately, Judi was able to do that BEFORE the injury so I am in for a rough road I am afraid. This is very common for people recovering from a brain injury and it usually passes. Say an extra prayer for me if you get the opportunity.
We did have a tough day Monday (7/11). Judi had a series of seizures that were fairly significant. Fortunately we have the appropriate drugs to intervene at home and can usually work through them reasonably well. I have become a fairly capable over the phone Dr these days and the use of a speaker phone where I can talk Judi through them helps her a great deal. Seizures still take a great deal of energy out of all of us, but I hope they will diminish as she continues to work through her brain recovery. So far all of her Drs agree that we want to allow her to continue recovering and not try to medicate her to the point where the seizures completely stop. Recognize that the way the anti-seizure meds work is to suppress some of the brain functions which is what we do not want to do. As long as we are able to manage her blood pressure and general functions, the seizures are not really harmful to her other than scaring her a bit (she is getting used to them now I think) and the fact that they drain her energy. There are risks as in most things like this, but I am sure Judi would rather be able to live as normal a life as possible as opposed to being medicated to the point where she is essentially sedated.
I think that is most of the big stuff. Feel free to come and see her. She enjoys the company and I know she gets tired of listening to me all the time. Thanx as always for the thoughts and prayers. Judi has come a long way, but we have a long road left in front of us and I would appreciate your continued prayers.
Steve
We did celebrate our 31st wedding anniversary on July 2 and it was a much better one than last year. It was still a very difficult day for me, but I continue to do my best to maintain the attitude that each next year will be better than the last. I am still very thankful for my time with Judi and we do our best to take advantage of the time God has given us together.
Judi continues to do well in therapy. We have started standing her up without the use of the standing frame when the male Physical Therapist works with her and I am there. We support her on both sides and let her stand. She really seems to enjoy being able to do this, but it takes a lot out of her and she only lasts a short period of time. As you can imagine, this puts a significant load on all her muscles and joints and is great exercise to try and reactivate her left leg. We did get her up in the walking harness today (11/13) and she really seemed to enjoy it. She kept her head up and tried to take a step, but the left leg still did not respond. We'll keep working this and hopefully it will come to her.
She continues to work with the iPad and even wrote my name a couple of weeks ago. There are a lot of applications that interest her and she has always been interested in technology.
Continuing to feed herself and the eye/hand coordination is getting better. She will brush her teeth sometimes, but has to be in the right mood. We have to watch her close here to ensure that the toothbrush doesn't get too far back and that she doesn't chew on it. We also use some swabs with a mouth wash on it to help clean her teeth and she really likes to do that herself. These are all good signs and we continue to encourage her to do anything she can for herself.
She is definitely saying a few words every now and then. I believe she is almost there and the words that come out are those that are a reflex where she doesn't have to think much about them. I can't wait until she can put it all together here since it opens so many new doors for her.
Her awareness continues to improve and her ability to interact is improving as well. She is starting to use sign language again. We had made a lot of progress before the infection and she is just starting to pick that up again. It is good to see her thinking about what she wants to say and then converting it to the appropriate sign. This is also indicative of an improving comprehension of tasks and concepts. She has also started reaching out for stuff in the grocery store and looking hard at the packages. I think she is trying to read them and it stimulates memories for her. She also loves to open the freezer doors to see how the doors work and what might be inside. As you can imagine, it takes me a lot longer at the store these days, but if it helps her learn, I'll take whatever time it takes.
We are continuing the neurofeedback (NF) and have started training new sites to bring her brain functions back to a stable and active state. We are trying to get to the point where we can focus on the speech center and hopefully that will be enough to help her begin talking again. I desperately need to have a good feedback mechanism from her so that we can focus her therapy as well respond more effectively to her needs. I am always worried that she needs something that I am not aware of because of this gap.
We have definitely entered the defiant stage and some days that girl tests every bit of patience I have! Unfortunately, Judi was able to do that BEFORE the injury so I am in for a rough road I am afraid. This is very common for people recovering from a brain injury and it usually passes. Say an extra prayer for me if you get the opportunity.
We did have a tough day Monday (7/11). Judi had a series of seizures that were fairly significant. Fortunately we have the appropriate drugs to intervene at home and can usually work through them reasonably well. I have become a fairly capable over the phone Dr these days and the use of a speaker phone where I can talk Judi through them helps her a great deal. Seizures still take a great deal of energy out of all of us, but I hope they will diminish as she continues to work through her brain recovery. So far all of her Drs agree that we want to allow her to continue recovering and not try to medicate her to the point where the seizures completely stop. Recognize that the way the anti-seizure meds work is to suppress some of the brain functions which is what we do not want to do. As long as we are able to manage her blood pressure and general functions, the seizures are not really harmful to her other than scaring her a bit (she is getting used to them now I think) and the fact that they drain her energy. There are risks as in most things like this, but I am sure Judi would rather be able to live as normal a life as possible as opposed to being medicated to the point where she is essentially sedated.
I think that is most of the big stuff. Feel free to come and see her. She enjoys the company and I know she gets tired of listening to me all the time. Thanx as always for the thoughts and prayers. Judi has come a long way, but we have a long road left in front of us and I would appreciate your continued prayers.
Steve
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