An Update as of 2/14/16

Wonderful Valentine's Day news! Bob and I are at home and resting peacefully in bed. We're so pleased with how well the testing went and that we were able to come home late yesterday afternoon. Thank you to all of you for your continued prayers and support. We certainly felt them.

-Megan

An Update as of 2/11/16

Great news! Bob has been experiencing multiple seizures a day since I last posted. His team of doctors have collected enough data to examine. The plan, as of this evening, is for Bob to have surgery tomorrow afternoon to remove the wires from his brain and for us to return home sometime on Saturday.

From our most recent conversations with Bob's team, it has been recommended that he have a resection of part of his hippocampus to remove the area where most of his seizures are happening. This area is badly damaged as is, so he won't be loosing much more functioning in that area than he already has. We're also still considering having the neuropace implemented, but we have time to discuss this as a family, and with Bob, before that decision is made. We have been informed that Bob will never again be completely seizure-free. The goal, at this point, is to lessen the amount of seizure activity.

We ask that you pray prayers of gratitude to our friends Bob and Alice who so graciously gave of their time this week. I have been held up by their kindness and generosity and am incredibly grateful for the breaks they provided me with throughout the day. Please also pray that Bob rests well this evening and sleeps soundly as this has been when he has been most anxious and confused. I am staying with him this evening to hopefully help ease his anxiety. In the morning, our friends Jim and Kathy will be here to spend the day with us, which is another blessing. As always, please send prayers of appreciation and love to the dedicated staff at UVA who have worked tirelessly this week to provide Bob with wonderful care.

-Megan

An Update as of 2/8/16

Bob had yet another day of ups and downs. He called and woke me very early this morning urging me to come to the hospital immediately. I checked in with the nursing staff who informed me he was doing well and wasn't going to be having surgery today. I did a little yoga, had breakfast and arrived at the hospital at 9:08. I know the specific time, because Bob reminded me of this throughout the day. I found Bob in a very agitated and anxious state. He was very rude and obstinate with one of his physicians, which as we all know, is not his normal demeanor or behavior. The doctor was incredibly kind with Bob and took everything in stride. I believe that Bob's anxiety and confused behavior are related to the murky life of living day to day in a hospital setting where the hours and minutes all get blurred for even the best of us. It also doesn't help that his brain is in a weird state due to the testing and that his medication levels are different from normal.

I was able to calm him down, and within an hour or so, he was remorseful for his early behavior towards his physician. He was embarrassed by the way he had acted and was desperate for her to return so he could apologize. Luckily she came around again for rounds and he was able to do exactly that.

Our friends stayed with Bob for a large chunk of the afternoon, which gave me the chance to head to Trader Joe's, pick up a new book at the bookstore and take a quick nap. They were so gracious to stay for so long and to provide me with some much needed down time. I am so grateful to them. They plan on being around through Wednesday, but have offered to stay until Friday, should I need them.

While speaking with Bob's team of physicians today, I learned a few things about his testing: The original 5 seizures he had early-on are most likely a result of the implementation of the testing equipment that was placed in his brain originally. Thus, these don't really count towards the data we need to determine when and where his typical seizures are happening. I was also informed that he did have a seizure yesterday, which is good to hear! Bob had me write him a note on the white board in his room to remind him that, Yes!, the doctors and nurses really do want him to have a seizure. In typical Bob fashion, he jokingly reminded everyone who entered his room today that, "Can you believe it!? These people actually want me to have a seizure! And more than one!" His doctors also informed me that they would once again be lowering the dosage of one or more of his anti-seizure medications tomorrow to hopefully trigger those pesky seizures.

Please continue to pray that Bob has seizures and they get recorded clearly. Please also pray for calm and peace for Bob, especially at night and in the early mornings when he is most anxious and restless. As always, prayers of gratitude towards the staff at UVA are always wonderful as we are so blessed with such gracious, caring people who are truly invested in Bob's care.

-Megan

An Update as of 2/7/16

Today was at times a frustrating and at other times peaceful day. When I arrived this morning, I was able to speak with Bob's physicians and learned that he did not experience any seizures last night. As of that point in time, he had not had a seizure in two days. The decision was made to reduce another of his anti-seizure medication dosages to see if this would trigger more seizure activity. We were told that if he didn't have anymore seizures today or tonight, they probably wouldn't be taking the electrodes out on Monday.

Bob's memory was very poor today and he struggled greatly with anxiety. When he would awaken from a nap, he was frequently confused and scared. When I first walked in his room this morning, the nursing staff was cleaning up spilled tea and having Bob put on mitts to keep himself from attempting to tear out his IV. Bob was happy to wear the mitts, as he said his scalp was itching and this prevented him from scratching himself. We spent the morning listening to the church services from our home church on his iPad and this brought us both some peaceful rest. 

Due to his poor memory, Bob has had a great deal of difficulty remembering to manage his own pain medication. His nursing staff has been wonderful about coaching him through this process, but we made the executive decision to take the pain medication out of his hands so to speak. A more consistent level of pain control was helpful to him this afternoon and we were able to play cards and converse with one another. There were glimmers of the Bob we know and love throughout the day as he attempted to make the doctors and nurses laugh. This was heartening to me.

I left for a quick lunch late in the afternoon and arrived back at the hospital to find out that Bob had ripped the IV and pain pump out of his arm to take himself to the bathroom. It was a bit of an ordeal to get everything hooked back up, but we are so blessed to be working with such caring and compassionate nursing staff who understand Bob's confusion. After getting him all hooked back up, we were able to spend the evening watching the Super Bowl together.

When I left this evening, Bob had not had any seizures yet. He made many attempts to stall me from leaving as his anxiety was ratcheting up. I reassured him that he was going to be well cared for at UVA and that the doctors and nursing staff were hoping he would have a few seizures so they could obtain better data on his seizure activity. A nurses aid was going to be staying in his room with him overnight to reassure him when he wakes up in the middle of the night, as this appears to be when he is most anxious and confused. 

I am so grateful to our dear friends Bob and Alice who will be coming up tomorrow to sit with Bob and give me a chance to get a break. They have offered to stay for three days and I have decided we will take it a day at a time to determine if we need them to stay for that long. Today's events made it very clear to me that someone who knows Bob well needs to be with him at all times when he's awake. 

Please pray that Bob has some seizures this evening and tomorrow. Please also pray that the increase in pain medication helps reduce the static the technicians were noticing in his data (it is alleged that Bob's pain levels were high due to his inability to control the pain medication and that this was causing "static" in the data they were collecting). Please also continue to say prayers of gratitude for the incredibly compassionate and caring staff at UVA. Especially after our experience this past summer in Buffalo, we are even more keenly aware as to how wonderful it is to be surrounded by kind, competent staff who are true professionals. Thank you again for all of your continued prayers and kind words. I am hopeful tomorrow will be a better day.

-Megan

An Update as of 2/6/16

Early today, Bob's epilepsy doctor informed us that they plan to remove the leads in Bob's brain on Monday, should they obtain data on a few more seizures this weekend. He will then stay overnight for monitoring. They wanted him to have a few seizures today, but this did not happen. They reduced his Keppra dosage this afternoon and we were encouraged to play loud music and have Bob drink some caffeine to trigger seizure activity. Tomorrow, if Bob does not have any seizures tonight, they plan to reduce his Lamictal dosage. 

At the beginning of the day, Bob wasn't controlling his pain medication well and was understandably feeling depressed and grumpy. After some coaching from his nurses, he was able to get his pain under control and we had an enjoyable afternoon together. He enjoyed having mashed potatoes with tomato soup for gravy, per his request, for lunch. This was a childhood favorite of his and was a treat for him since he's been having some difficulty chewing. 

I was able to leave for a few hours this evening to enjoy a casual party with some of my colleagues here at UVA. This was a nice reprieve from hospital life. Upon returning to the hospital, Bob was back to feeling irritated and was a bit daffy. I reassured him that the doctors and nurses want him to have seizures while he is staying at the hospital so they can obtain data on how best to move forward from here. I left him as he was drowsing off to sleep. I am hopeful that this return to a more agitated and confused state was a sign that he had an impending seizure.

The current course of action for Bob is for the team at UVA to continue to map out where his seizures are taking place so they can determine an appropriate course of action. As of today, they had mapped out 5 seizures, two on one side of his brain and three on the other. Because the seizures are happening on both sides of his brain, this rules him out of the surgery that would remove pieces of the brain where the seizures are initiated. He is still potentially in the running for having a neruo-pace implanted later this year-- the neuro-pace implementation would work to stop the seizures before they happen, similar to a heart pacemaker. This can only be done if his seizures are beginning in only two or less locations within his brain. Thus, his team needs a little more time to determine if his are only originating in the two locations they have already identified, or if there are other locations within his brain that are impacted.

Please pray that Bob has a seizure this evening and a few tomorrow. This will provide his team at UVA with more concise data to make better decisions about his continued care. Please also pray that his seizures are only happening in two locations within his brain so that he can remain a candidate for the neuro-pace. We ask that you also say prayers of gratitude for the team of doctors, nurses, therapists, and assorted hospital staff at UVA who are making Bob's stay a positive one. Your thoughts and prayers are always appreciated and I am so grateful to my friends and family for keeping in touch.

-Megan

An Update as of 2/5/16

A resident from Bob's neurosurgery team gave us good news today: They mapped out five seizures as of this morning! They still have to map where exactly in the brain those have come from, but they have captured some from both sides. Bob slept most of the day and I was able to have a long walk and dinner with my good friend, Pam.

This evening, Bob was given control of his pain medication which allowed him to be more comfortable. He was quite groggy and slept much of the evening. That's a lot better than being in pain, so I am fine with that. We tried playing cards tonight for a little while, but he was falling asleep sitting up so we didn't finish. I ended the evening by enjoying more of my book. 

Please continue to pray that Bob continues to sleep well and feel as relaxed as possible. Please also pray over the doctors and staff at UVA, we are so thankful for all of their expertise and guidance. Thank you to all of you for your continued prayers and kind words. They are healing to my soul.

-Megan

An Update as of 2/4/16

As of yesterday, the surgery went well.  Bob's surgeons placed the electrodes deep in the hippocampus, as well as on the right temporal lobe and the left temporal lobe. It took seven hours. The doctor said he only expected Bob to be in the ICU overnight, which turned out to be the case. 

Yesterday evening, Bob was foggy, but was able to wake periodically to say a few words. He couldn't believe that the surgery was already finished and that it was 7 PM. All in all, the staff were pleased with how he was doing.

This morning, Bob was settled into a new, private room in the epilepsy monitoring unit. Yeah! They gave him some stronger pain meds that kept him asleep for much of the day. I was able to enjoy a book that Maura recommended, "This House of Sky." It was nice to spend time thinking about being in Montana while Bob rested. 

Bob has 124 electrodes in his brain that are attached to monitoring equipment. While the staff were working on the electrodes, I thought Bob was sleeping through the process, but I was wrong! When they announced that the code for one of the wires was RFM, Bob chimed in that it stood for Really Funny Man. He loves to make people laugh!

This afternoon, Bob experienced his first big seizure during this stay. It took him about an hour to recover from it and he was fairly confused and dazed. During rounds tonight, I was told that the doctors retrieved strong data from this seizure. This period of monitoring will help us collect specific data as to where in his brain the seizures are starting so that we can chart a course of action.

We continue to be thankful for all of your kind words and prayers. Please continue to pray over the doctors and staff at UVA and for Bob to be able to rest comfortably. 

-Megan 

An Update- 2/2/16

After four hours of appointments to get all checked in and checked out (medically), we are all set for the big day tomorrow. We are finally resting in our hotel room, and will meet friends for dinner a little later. We are to arrive at the hospital at 7:30 AM. The surgery will start at 9:30 AM and last most of the day (Yikes!). They will come out every two hours to let me know how things are going. When they are finished, Bob will spend the first 24 hours in ICU. 

We learned that it is unlikely that they would keep him longer than two weeks of monitoring due to the risk of infection. One possible outcome is that if they find a clear focal point where the seizures are originating, they might just go ahead and do the resection right when they go back in to remove the wires. Or else they will just take the wires out ad then all of the data they've gathered will go back before the neurology team for them to recommend a course of action. 

I'll keep you posted as I get updates.

-Megan

An Update- 1/20/15

Bob is currently undergoing the WADA Test. The will last until this evening. He has to lay flat on his back for 3-6 hours. It is going to be a long day, but I'm glad we will be able to get it done.

-Megan

An Update as of 9-20-13

Bob and I have declared today, September 20, 2013, as his turning point day. We have just returned from a four day visit to the Mayo Clinic. The news there was not altogether good. Despite Bob’s diligent efforts to improve his memory using the computer program Lumosity, and our general impression that Bob’s memory for events during the past ten years was improving, his scores on his neuropsych assessment were no better and in some cases worse than they were in June. That test was what our neurologist was using as a marker for how much good the aggressive immune suppression was working. In addition, both of the neurologists we see at Mayo were concerned about the number of seizures that Bob has been continuing to have, even though the intensity of the events has improved somewhat.

What was encouraging was that Bob had a sleep study while we were there and he was diagnosed with sleep apnea. The study showed that his breathing stopped 50 times in two hours! That is not good news, except that it leads to a new intervention that we are hopeful can make a significant difference in the healing of Bob’s brain. “If you’re not getting a good nights’ sleep” our neurologist said flatly, prior to the sleep study, “then we are beating our heads against a brick wall.” Alas, it appears as though we have.

We also returned with plans to make a change in one of Bob’s anti-seizure medications, introducing a new medication and gradually discontinuing one that we have felt was causing some unpleasant side effects, such as a strange feeling up and down the left side of his body. We will also continue with the immune suppression infusions for several more weeks and then gradually wean off of them once we have a chance to see the effects of the new medication.

While we were at Mayo, our days were quite full with various medical appointments. One day when we only had appointments early and late in the day, we spent the middle of the day camped out in one of the waiting rooms as a “checker” for a third neurologist who we hoped to see. This is a big thing that is done at Mayo, when you can’t get an appointment with a doctor who you want to see, you sign in and then wait to see if anyone doesn’t show up for their appointment so that you can have their slot. We were not successful, and a nap probably would have done Bob more good, but at least we got to partake in that particular part of the Mayo culture.

We also managed to have three significant accomplishments while we were in Rochester. I, at long last, submitted my final revision of the second edition of my book Trust Matters to my publisher! It feels wonderful to have that project on its way to the presses! Meanwhile, Bob and Maura submitted a substantial proposal in response to an attractive RFP. And we had a delightful conversation with the superintendent of the Rochester Public Schools. So our week was productive even beyond the outstanding medical care Bob received.

We returned home last evening and spent today on a 13 hour odyssey from Toano to Newport News to implement these new treatments. There were phone calls to various providers, insurance permissions to sort out, getting fitted for his new CPAP machine, and a trip to a far flung pharmacy when our local pharmacy did not have two of the medications that Bob needed. By the end of a long day, we were finally able to accomplish all of our errands and returned home feeling hopeful that we are now on a path that will create the conditions for Bob’s brain to heal.

With that I will say “Good night, and sweet dreams!” We will be dreaming of nourishing sleep and healthy days ahead. 

-Megan

An Update as of 5/9/13

Hey Everybody,

I wanted to let you know that Bob is back in the hospital again. He was admitted this morning in order to begin another round of treatment with Rituxan. He is also having Solumedrol while he is here as well as lots of tests to see what's going on. That's because despite his being on strong steroids, his brain has been inflammed up again. While this has been discouraging, we are hopeful that the new round of medication is what he needs now to support his healing.

We are blessed to have our friend Doug McCready visiting from Columbus. That has been a great comfort. It is amazing that he happened to be here right when all this happened.

Thank you for hanging in there with us through this long journey.

Megan

An Update as of 4/13/13

We have hit a bit of a rough patch since I last posted to the blog. A few days after that post, Bob began having some seizures spaced a few days apart. And then, as they have before, they began to come more and more frequently. We decided that the pulse of steroids every 6 weeks did not seem to be providing the level of protection that we had hoped so we have now changed to a course of oral steroids three days per week. The plan is to have a very slow taper over the next ten months. We are hoping that today turns out to be our first seizure-free day (so far so good!) and that it will be the beginning of a long string of seizure-free days.

It has been a puzzle from the beginning to know how much immune suppression to do and for how long, and this latest episode has just let us know that we needed to do a little more for a little longer than we had planned. Please continue to keep Bob in your prayers as these next few weeks are important ones.

 -Megan

An Update as of 1/25/13

We are once again in need of prayer. Bob has experienced a setback in the past week, with a significant decline in his memory function and to some extent his cognitive processing as well. Most things seem to slip out of his memory almost immediately, so that he asks the same questions and wants help rehearsing what have been the events and activities of his day again and again. He is pleasant and happy to help with things around the house, but unloading the dishwasher sets off a fresh scavenger hunt for where things belong every morning.  It has been disconcerting and worrisome for us both.

There are two possibilities for this downturn that the doctor is exploring. Even though we are not seeing much in the way of seizure activity, it is possible that he is having seizures that are too small to be seen but that are nonetheless hurting his brain.

The second possibility is that Bob's immune system is springing back into action, still confused and thus back at attacking his brain. Because Bob does not have a confirmed diagnosis and because the research into this class of diseases is quite young, one of the ongoing questions in charting a course of treatment has been to determine how much immune suppression is necessary and for how long. What we are trying at this point is a high dose of steroids that has to be taken intraveneously. A home health care nurse came to the house yesterday to administer the steroids while I was at work and Bob was home with his dad.  The nurse tried to teach Bob how to do it himself. Although at other times, that would have been a challenge Bob would have enjoyed taking on, with his current deficits it caused a lot of worry and upset. The nurse came back today to teach me how, so I will be Bob's nurse this weekend.

We may be in for a wild ride this weekend, depending upon how Bob reacts to the steroids. We'll hold onto our hats and get through, hoping and praying that this is the answer to turning things back around. One encouraging sign was that this afternoon Bob mentioned that he thought he was feeling a little better. He noted that his memory was not appreciably better but he felt somewhat less confused and befuddled. We'll hope that this improvement continues. 

Thank you for your continued help, support, and prayers. 

-Megan

An Update as of 10/28/12

Bob is doing very much better this weekend after making some adjustments to his medications. On Friday evening Bob had one of his "episodes" with the alarming new element that he was experiencing double vision. We called Bryn and left her a message about this new development. She flew into action to learn more about the three anti-seizure medications that Bob is taking. She also was able to reach Dr.Kass at Baylor who has generously been consulting on Bob's case.

What we learned is that two of the three medications are supposed to be given three times a day eight hours apart, not twice a day twelve hours apart as Bob has been given. The phenobarbital, in particular, can have dangerous withdrawal symptoms, including seizures, and Bob has been experiencing several hours of withdrawal twice a day! This helps explain the early morning confusion and anxiety while he was experiencing at the rehab hospital as well as the anxiety he has been feeling in the evenings, impatiently waiting for it to be time to take his meds.

Bryn had us adjust his medication schedule to three times a day, and what a positive difference that has made! Bob has not had any more of his episodes of feeling jittery and like he was having to struggle to "keep it together." Spacing out the Keppra has also seemed to eliminate the bouts of hypomania, of over-the-top exuberance and grandiosity that he has sometimes been having.

The third medication, Vimpat, seems to be the likely culprit for the double vision, so we have begun weaning him off of that med.

I am once again so, so grateful for Bryn's smarts, persistence, and love. How could we have negotiated this treacherous journey without her? I am upset that Bob's doctor who prescribed all of these medications has not been more attuned to these issues, and just so glad we've had someone on our team to help sort this all out.

Bob is also making really outstanding progress in recovering his physical strength and balance. He is now able to move about the condo without a walker or having someone at his hip, which he is very happy about. When we go out, he uses Exerstride walking sticks that were a gift of a group of Wellcoaches students and faculty, which is very much cooler than a walker! They even got me a set as well, so we are looking forward to making these a regular part of our exercise routine.

Thank you to everyone who has been keeping Bob in your prayers. It feels like we have taken another important step forward in his healing journey.

Megan

An Update as of 10/13/12

Our big news this weekend is that on this upcoming Friday Bob will “graduate” from inpatient rehab and to return to life in the “real” world! Our plan is to stay in Charlottesville in the condominium for the first two weeks in order for Bob to continue outpatient rehab at Health South and to be near his doctors here at UVA. We then plan to make the transition back home to Williamsburg on November 3^rd.

There will certainly be challenges ahead in making these moves, but I think these are going to be really important steps in healing Bob’s memory. One of the challenges will be that Bob is still rebuilding his physical strength from his month on inactivity. He is now beginning to get around using the walker rather than the wheelchair, except for longer jaunts like our daily walk outside, which he enjoys tremendously. We have been having some lovely fall days here in Charlottesville. The bigger challenge is going to be learning live safely with Bob having such an impaired short-term memory. His sense of time and space also seem to be pretty impaired as well. We are very hopeful that all of these things will heal in time and that he can make a full recovery. But progress is likely to be incremental and take some months, so we are going to have to establish new routines and patterns of living in the meantime.

The good news is that Bob is continues to have a very positive attitude and has a strong desire to do the work needed to get better. He is accepting of the feedback that his conversation is repeating itself and he is even starting to have some awareness himself when he is saying the same things over and over again. He has begun to keep a journal where he captures his thoughts as well as his activities at several points throughout the day. That is proving to be very helpful and is giving him some perspective of the passage of time. I am guessing that this will be one of the strategies that we maintain and rely on throughout this healing process. I’m sure we will invent others as well. Michelle shared with Bob an analogy that she uses with her students, many of whom struggle with memory issues. She tells them that their brain is like a house where the electricity is not working well, so what we can do is to make sure that there are lots and lots of flashlights in the house. Those flashlights are the strategies that we can learn to use. From the outside, people are going to see lights on in the house, but only you are going to know that you are using strategies, or flashlights. (When Michelle shared this analogy with Bob, he added “Yeah, they also won’t know how many batteries I’m using up!).

Bob is also his sweet loving self. He recognizes the people he knows and loves and that is a blessing. He enjoys having visitors and talking on Skype with family members. He also enjoys looking at family photos, even though he is a little overwhelmed at remembering so little about the context of the pictures. A coaching colleague reminded Bob that he was having the opportunity to practice IAC coaching mastery #4: Processing in the Present. Somehow there have got to be some important lessons in that!

Treatment Plan as of 9/17/12

So yesterday the seizures began again when he had been off of the medication for about 30 hours. That obviously was a bit of a let down because we were feeling hopeful that we wouldn't need to go back to the medical coma. But getting where we are means a couple of good things: 1) He doesn't need that much of the coma medicine to control the seizures and 2) In planning out going back in for our second round of medical coma we don't need to plan on keeping him under for as long as we might have needed to if his seizures were harder to control. These two things help to minimize his risk while he is here because he will hopefully have more time where he will be able to cough and help clear his lungs to reduce the risk of infection. The other thing that happened by the end of yesterday is that he became slightly more swollen again. When I mentioned this to the attending this morning he pointed out to me that the medication for the medical coma also helps to "confuse" his white blood cells that are making all this inflammation and wreaking so much havoc in his body. What that means to me is that although we do not have a diagnosis 18 days into this journey we are doing the right things by shutting down his immune system. Beyond that, it continues the hope that as the medications to shut down the immune system work more and more, he will get better and better. One day hopefully that will mean him back again but for now we are in a process of accepting the small wins and taking the challenges in stride.

Today we have the next dose of the immune suppression medication. Beyond that maybe US Airways will actually run the flight to get me home to Vegas.

Crossing my fingers that both of those things go well.

Bryn

Treatment Plan as of 9/10/12

Dear Blog Readers and Bob Lovers-

We are finally at the University of Virginia and on all the right medicines that I would want to have him on with a video monitor of him and his seizures all the time with a full time epileptologist monitoring his seizures and recommending medication adjustments throughout the day. This feels like a huge weight off of my shoulders because although Riverside hospital did a great job of diagnosing him with autoimmune v. paraneoplastic limbic encephalitis and got him started on steroids 4 days into his disease process, the last 2 days it has been clear that they weren't sure where to go with him while we waited for our transfer. After we got to UVa and had a parade of 5 different doctors who all seemed to have sound ideas about how to better his care, I felt that I could sleep in a different way than I have slept in the last 11 days. For the first time except for the hour and a half when we left and he pulled out his ventilator, everybody on the team went home and slept and that was a blessing. Plus that meant we all got to have some time with little Everest, our joy in this time. :)

Today we had rounds and after their reading and thinking the team is now completely on the same page with me and the experts I have involved (I like to call these guys Dad's Big Brains). We are going to give him 2 heavy duty medications called Rituxan and Cytoxan to shut down his immune system to stop the attack he is experiencing on his brain. They say that getting to these medications 11 days into his illness is "as aggressive as you could hope to be" and much earlier than many people get treatment. This makes me feel that we have not lost time in our treatment plan with his transfer and we are getting him the very best treatment in the very best fashion that you could hope for with a bad disease. On top of the immunosuppression, he is going to get a tracheostomy and g-tube so he will have the least risk of infection while we allow his brain to recover. We will do these things today and then we will pray and maybe after some weeks to months Dad will be back.

I feel very good. I feel very hopeful. I can't wait to have my Dad back. I am so happy that if you are reading this you are praying for the same things as me.

With love,
Bryn

Treatment Plan as of 9/7/12 PM

The decision has been made to med-flight Bob to the University of Virginia medical center in Charlottesville, Virginia, where he can start on the Level 2 treatment of this disease immediately which is to aggressively shut down his immune system. We are just waiting for a bed to open up at UVA. We don’t know exactly what the next level of this journey will be, but we are encouraged that the experts concur that this is the appropriate course of action. There are serious risks involved with this treatment, but the risks of waiting any longer are greater. Please pray for safe travels for all of us as we transition to Charlottesville, and especially that Bob will respond well to this next level of treatment.

Treatment Plan as of 9/4/12

Ok guys. We have really gone through everything again and at this point Infectious Disease feels really, really convinced it's not infectious and Neurology thinks it is a kind of autoimmune limbic encephalitis-- most likely something called anti-NMDA receptor encephalitis. I (Bryn) agree with the thinking and have fought to leave him on one antibiotic and antiviral just in case, but he will get started on high dose steroids and IVIG this afternoon. If he doesn't get better then he will get plasmapheresis or other immunosuppression. I feel good about this as a possible diagnosis and also the fact that he has a good prognosis if this is what he has and he responds to treatment. I am also happy that we have a treatment plan that we are going to go down. If you want to read up on what this is that we are starting to treat him with, please check out this article as I think it is a good summary of the disease and treatment.