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
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