An Update as of 9/30/12

This is the day that the Lord has made. Let us rejoice and be glad in it! Yesterday, Bob was breathing well enough on his own that the were able to put a speaking cap on his trach and he was able to talk with us! Although it was halting and slow, it was wonderful to hear his voice for the first time in nearly a month. Ever a curious fellow, what he mostly had were questions for us. 

The area of Bob's brain that has been most severely impacted has to do with memory. At the current time, he has difficulty encoding new memories, as well as retrieving old memories. For now, he is living very much in the present moment! He has very much enjoyed Skyping with family members, as well as watching  slide shows and videos of recent family events. He did not remember that he has a new grandson, Everest, but was tickled to see pictures and videos of this precious new little person. Michelle reminded Bob of the advice he had given her when she was in the hospital recovering from her C-section, which was to Practice Mindfulness. He grinned when she told him that, so she made him a sign that reminds him of that to post at the end of his bed.

We still have a long way to go. Bob has another round of immune suppression tomorrow, and we continue to have to be on guard against the three enemies of infection, clots, and bed sores. We still do not know precisely what Bob has or what caused it. The leading contender is Autoimmune Encephalitis, but we don't know that for sure. This is a very new branch of science, so not a lot is known. The tests from the Mayo Clinic all came back negative, so he does not have one of the kinds of it that they know a bit more about. We have not yet received the results from the world expert in Spain, who is working on some tests for new variants of this disease and offers these tests free of charge in cases like Bob's when the existing tests have come out negative.

Please continue to keep Bob in your prayers. As fun as it has been to have him awake and aware, he is still in a medically fragile state. We are so grateful for all of the love and care that has come our way.

Megan 

An Update as of 9/28/12

Today was another happy day of really great progress for Bob. As I headed for the hospital this morning, it was my intention to ask at morning rounds how soon Bob might start with physical therapy because it seemed to me that he was ready for more than my little “ICU Pilates” exercises. Well, a few minutes after I arrived in Bob’s room, and before morning rounds even started, in walked two physical therapist and an occupational therapist! Somebody else must have thought he was ready for more too! Those women were wonderful in getting Bob active in washing his own face, and reaching for things. Then the highlight of them all was to get Bob up and sitting on the edge of the bed. It was a huge effort for him after lying in bed for a month, but we all cheered and he smiled.

More physical challenges followed as he was taken off of the ventilator to breathe on his own with just some oxygen support -- first for a two hour stretch of time and then later for four hours. He did great with that. Those great runner’s lungs are serving him well. He also sat up in a chair for three hours, where he was treated to an “ICU Spa Day” with a shampoo and shave. The staff in the ICU are all so pleased with his progress. Nurses who have cared for him previously kept peeking into the room to share in the happiness at seeing him awake and making progress.

Another thing that helped today to be a good day was that Bob was finally able to sleep for about four hours last night. He had hardly slept since he first woke up on and it was beginning to wear him out. He also took a short nap after his morning exercises and another in the early afternoon. The doctor explained that while Bob was in the coma he lost any sense of natural day and night rhythms, so it takes some time to reestablish a natural sleep cycle. We are praying for Bob to get a good night’s sleep tonight so he can begin to get those natural rhythms established.

We continue to be so grateful for all of your prayers. They are certainly making a difference!

 

An Update as of 9/26/12

Today was a happy day! Bob was more alert and more responsive than he has been since he was sedated for the second time at Riverside three weeks ago. His eyes were showing recognition of us, and he could communicate by blinking his eyes. By the end of the day, he was able to nod slightly, make facial gestures, and mouth simple questions like “What happened?” and “When?”. He got a case of the giggles this afternoon, and his silent laughter was infectious even though it caused all kinds of alarms to go off on the breathing apparatus, and sent him into coughing spells.

Bob is still extremely weak from laying in bed for four weeks without moving. The muscles they are working most diligently to strengthen are his diaphragm and those related to his breathing. They put him on a two hour trial with only minimal breathing support this morning, and he did so well that they extended it to four hours this afternoon. He has a good strong cough and is often able to clear his passageways himself. Tomorrow they are talking about a trial of taking him off the vent for a period of time with only some oxygen over his trach. Bob can move his fingers and toes now more consistently, and with some assistance was able to move one of his arms up to scratch an itchy nose.

Bob really seemed to remember things that we talked to him about, like running marathons and where he grew up, as well as the family and friends that we talked about. His short term memory is not as good and may take some time to recover. So I answered his questions about what happened, when,  and where we were many times throughout the day. I also told him again and again that thousands of people around the world were praying for him. He often mouthed “Wow” when I told him that. As I was getting ready to leave this evening, Bob kept mouthing something that I didn’t understand. I reassured him the best I could that he shouldn’t try to figure it all out tonight and that he should try to get some rest, but he didn’t seem satisfied. It was breaking my heart to leave him seeming so unsettled, but it was shift change for the nurses and time for me to go. When I turned back at the door, I suddenly understood what he wanted. He was saying “I want to pray.” When I finally understood, his eyes lit up and he nodded. I came back and offered a heartfelt prayer for Bob’s healing.

One of the miracles that Bob was privileged to be a part of during his years of ministry was when he prayed with a man in the hospital who was discouraged because he had just received his second kidney transplant but his body was in the process of rejecting it as it had rejected the first. It was close to the point where the new kidney would be damaged beyond saving. This was a good man who, like Bob, spent his life helping and serving others. In talking with him, Bob realized that this man thought it would be somehow inappropriate for him to pray for his own healing. Bob assured him that God would be pleased to receive his petitions on his own behalf. From that very night, the man’s body mysteriously stopped the rejection of the kidney, and the transplant was ultimately successful.

I remembered that story this evening, and I reminded Bob that even though he could not speak out loud because of the trach, God would certainly hear his prayers for his own healing.  The anxiety melted away from his face, and I was able to leave him in a much calmer state.

So I am pleased to add one more heart to those thousands lifting prayers for Bob’s healing, that of Bob himself.

An Update as of 9/25/12

Today was a roller coaster day. It was mostly a day of good news and encouraging signs, punctuated by some hard moments. When we arrived at the hospital this morning, Bob’s eyes were wide open and we saw a look of recognition when he saw us. He was able to follow us with his eyes, and seemed to be understanding what we were saying. He was able to answer some yes and no questions by opening and closing his eyes, and turn his head a little.  We even had a Skype session with Bryn.

As the day went on, Bob was able to add a few more competencies. I went out for a walk after lunch, and I got a text from one of the doctors that said “Guess who is obeying some simple requests!!” I hurried right back and found that Bob was able to squeeze his hands a bit, and later he even began to wiggle his toes a tiny bit. These signs were greeted with great joy not only by us but by his nurses and the others who have been contributing to Bob’s care.

In addition to these moments of joy, though, there were some difficult moments when Bob was struggling and uncomfortable, apparently suffering from withdrawal from the pentobarbital and with taking back over more of his breathing on his own.

At the end of the day, we got the best news of all and that is that he’d had no seizures throughout the day!

Tomorrow, we hope and pray that he will remain seizure free as he gets more and more of the pentobarbital out of his system, and that he will gradually get back more and more of his facility to move his limbs and breathe on his own.

Thank you for standing with us in this journey. 

-Megan

An Update as of 9/24/12

We are feeling encouraged this morning. Bob is down at a lower dose of the coma-inducing medication than he has been, and still no seizures. If all continues to go well, they will step him down to the lowest dose at 3:30 this afternoon, and if that too goes well, then he will come off the medication completely at 3:30 am tomorrow morning. Then they’ve told us that it will take two to five days for him to fully wake up. Already this morning, we are beginning to see glimmers of facial movements and even moving his head slightly.

We are praying fervently that we continue through this week with no seizures and also that we keep the three enemies of infection, clots, and bed sores at bay. Also pray for comfort for Bob as it is likely to be quite confusing and frightening for him as he first begins to wake up in a very groggy state. 

-Megan

Update as of 9/23/12

Last evening, after we left the hospital, Grandpa, Laurel, Evan, Michelle, little Everest and I went out to eat at the historic pedestrian mall here in Charlottesville. As we were strolling down the mall after a nice meal, I happened to run into Jay and Susan Perry, the friends who had located the condo we are renting and that has been such a blessing. They, in turn, had just happened to run into Claire and Howard Goodman, the friends of theirs who had offered to let me park Bob’s car in front of their house, which solved another of the small challenges in getting settled in a new place under these difficult circumstances. So, out of the clear blue, the four people who I had wanted to have the opportunity to thank in person for their kindness all converged in the same space and time! Those are the small miracles that keep happening that reassure us that there are larger forces afoot than those we can see and know.

We needed that reassurance this morning at rounds when we learned that Bob had had two seizures around six o’clock this morning. While that was a disappointment, it only meant making some adjustments to his medications and temporarily going back up a step in his coma-inducing medication. By this afternoon, he is back down to the dose that he was at overnight, so we are praying hard that he is able to stay at this level without any further seizures, and then successfully make the next reduction at 3:00 am.

In chatting with family members this morning, it emerged that four of us had had dreams of Bob awake and talking last night. We’re taking encouraging signs anywhere we get them!

Thanks again for all your prayers.

An Update as of 9/21/12

This was a day of collecting more pennies. It was a day when we kept the triple enemies of infection, blood clots, and bed sores at bay, and for those blessings we are thankful. We are grateful especially to the nurses and doctors whose hard work is behind those blessings, as well as to all of you who are praying for Bob’s well being.     

Throughout the day they continued to wean Bob off of one of the two coma-producing medications, and when that went well with no seizures, they began to taper off the second medication. They are taking this second medication down very slowly and cautiously, watching the EEGs to be sure that he is not starting to have seizures. If all goes well, they will finish this tapering by Monday afternoon. Then, because of how this medication gets stored up in his body, it will take another two to five days before Bob begins to wake up.     

At a consultation with the doctor this morning, he said that they do occasionally have people come back out of the coma immediately back to themselves again, but he cautioned that that was much more common of people in their twenties than in their fifties. So for those of you bold enough to pray for miracles, you can visualize an alert and ever-curious Bob, waking up interested to learn all that has transpired while he has slept.    

If instead, our hearts get broken once again by the return of the seizures, Bryn has assured me that while the mystery will perhaps deepen, we will not be out of options for paths to pursue.

-Megan

An Update as of 9/20/12 Mid-Day

Bob completed his surgery around 12:30 today. The surgery was completed without complications and the pacemaker was removed easily. He is now back resting comfortably in his room. Thank you to everyone for their continued prayers for Bob.

An Update as of 9/20/12 AM

Bob was taken into remove the pacemaker at 11:00 AM. We pray that it slides out easily without to much tearing or cutting, and no damage to his heart. The operation will take about an hour, but with the prep and recovery, it will be about 3 hours in total.

-Megan

An Update as of 9/19/12

This is another quiet day as they slowly take Bob off of one of the two coma-inducing medications. After we got our hopes up the last time they brought Bob out of the coma, only to have the seizures begin again, one of the nurses said to me “Honey, take the pennies – they spend the same as the dollars.” That has been a good reminder to be grateful for all of the little things along the way. Each day that Bob doesn’t have an infection, or a clot, or a bedsore, or any of the other things that can sneak up and get him while he is in this vulnerable state, that is a penny we can celebrate.

Tomorrow, Bob will have a surgery to remove his shiny new pacemaker, because one of the leads has come loose and he no longer needs it. He is tentatively scheduled for 10am. There are certainly risks with having a surgery with his immune system so suppressed, but the benefits outweigh the risks because once it is out it will allow the doctors to get a brain MRI and try to get a better idea of the state of Bob’s brain. Once past the surgery, then I think they will continue with slowly bringing Bob off of the second coma-inducing medication as we watch to see how he does. Maura has decided to stay an extra day so that I won’t be waiting alone while Bob is in the surgery. Then Bob’s dad and sister should arrive tomorrow evening. Perhaps by then Bob will once again begin to open his eyes and wake up without the seizures starting again. That is our prayer.

You can bet that last evening when I stepped into the elevator at our condo and saw a bright shiny penny on the floor, I picked it up! 

-Megan

Things to Love About Bob- From Carol

Bob can make it through this and more!

Observing his endless energy

Brings out the strengths and best in all

Team builder with appreciative inquiry

Sunday morning Provisions

Co-creator of Evocative Coaching

High expectations for all who encounter him

Always has a quote for every situation

Non-violent communication

Never gives up

Expressing empathy in many ways

Nourishing our minds

My coach and motivator

One of a kind

Resourceful in many disciplines

Awareness of others and self

Necessary for so many people

An Update as of 9/18/12

Today is a quiet, waiting day. Yesterday Bob received the second dose of the immune suppression medication that he takes once a week for four weeks, so we are waiting to give it a chance to work. Bob is back in the medically-induced coma, and seems to be resting comfortably. They plan to bring him out of it again either tomorrow afternoon or more likely on Friday morning to see if the seizures will stay at bay. If not, they will put him back in the coma and keep trying every few days. From some of the literature that  Bryn read, it seems that it is the Cytokine, the once a month immune suppression medication, that really packs the biggest punch. So it could be that we have to wait until the second dose of that in three weeks before things are well controlled. In the meantime, it takes many doctors and nurses working very hard to support him while he is in this coma state. We are so grateful for all of their care. His swelling is a bit worse again, which Bryn said is an indication that his underlying inflammation is not as well controlled as we would like. We keep doing our ICU Pilates every hour or two to keep his joints from tightening up. That is the main work that those of us on his bedside team can do. That and pray and learn a new, deeper kind of patience and faith.  

The biggest news today is that because one of the leads on Bob’s pacemaker has come loose, and he does not seem to be relying on it to keep his heart going, that either later this week or early next week they will take back out his shining new pacemaker. This surgery carries with it some significant risks because of Bob’s immune suppressed state. But the pacemaker is preventing them from being able to do brain MRIs, and what is going on in Bob’s brain is what is of primary interest to the doctors who are orchestrating his care, so the benefits outweigh the risks. We ask for specific prayers that he be protected from infection during and after that procedure.

Bryn felt good enough about where we are in Bob’s healing process and the plans  that are in place for going forward that she headed back home to Las Vegas. My sister Maura, who has been such a blessing, will be here through tomorrow, and on Thursday Bob’s dad and sister will arrive. I continue to feel so well supported by the love and care of so many people. Thank you all for all of that. 

-Megan

Things to Love About Bob- From Lissa S-B

ridiculously LOVING
INFINITELY wise
a FAVORED child
ETERNALLY gracious
tried and TRUE
REVERENT to all
immeasureablyEMPATHETIC
KINSHIP rich

Bob is LIFETREK!

Happy Day, Lissa S-B

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

Things to Love About Bob- From Jin

All the 20 things about Bob are so descriptive of him…larger than life.

For me

Bob is a fighter, an evangelist and wonderful human being who is fabulous, amiable and reliable to work with.

Take the first words and you get few and far….indeed few and far between have I encountered someone like Bob.

God Bless! I continue to pray for a speedy recovery for Bob.

Things to Love About Bob- From Denise

Always learning, for he is

Filled with curiosity;

Always encouraging, for he is

Filled with hope;

Always inviting, for he is

Filled with spirit;

Always grateful, for he is

Filled with abundance.

Bob is a wonderful reminder about how the way we show up can touch others.

An Update as of 9/17/12 AM

They warned us that this would be a rocky road, with two steps forward and one step back. It's just that the ups are a lot more fun than the downs. Late yesterday afternoon we learned that the EEGs showed that Bob began having seizures again and that they were increasing in frequency. So they put him on a second anti-seizure medication and watched him overnight. 

Overnight they put him back into a medically induced coma. They will leave him under for two days and try again. This afternoon he will get his second dose of one of the immune suppression medications, so that may help.

Yesterday when Bob was awake, he began to be able to follow us with his eyes a little and even wiggled his toes a little, before the seizures started again and he was once again unresponsive. At this point it is impossible to determine the extent to which his lack of responsiveness is due to the sedation medications, the after effects of the seizures, or the damage done to his brain by his misdirected immune system. That will begin to emerge in time.

We are having a quieter and more somber day than yesterday, but we are staying strong. This is the kind of course we've been told to expect. US Airways gave me a little gift in canceling Bryn's flight back to Las Vegas last evening. So I get to have her with me one more day.

Thank you all for your continued care and prayers.

Megan

20 Things To Love About Bob

The following poem was written by Erika Jackson, a close family-friend and colleague of Bob's. We'd love for you to join in on the fun and submit your list of things you too love about Bob. We'll read these aloud to him as he heals.

Good morning all - I'm having a bit of a struggle finding happy today. So, in honor of Bob's love for lists and acronyms, here are 20 things I love about Bob. What about you?

Rebel

One willing heart...

Boisterous

Extravert

Resilient

Tenacious

Thirst for knowledge

Song-writing inspiration

CyBob - as Michelle affectionately calls him
Heartfelt conversations

Affection and admiration for his wife

Never takes

No for answer

Evangelist for love

Noteworthy

Magnanimous

Orator

Respectful

Appreciative Inquiry

Non-Violent Communication

An Update as of 9/16/12

Today we are writing with the happy update that we seem to be at the turning point of this journey. On Thursday they started the medically induced coma and he has not had a seizure since then. Yesterday they started weaning off of the Pentobarbital which was meant to be more of a check to confirm that we still needed the medication before we took him under for the next week or two while we waited for the immunosuppression to be fully in effect. That was the thought but then the most amazing thing happened: No seizures! And now he has been off of the Pentobarbital since 3pm yesterday and still no seizures! And on top of it, yesterday morning we were trying to figure out what to do because his fluid kept leaving his blood vessels into his tissues causing him to be dehydrated inside of his blood vessels but swollen in his tissues (to the tune of 50lbs of extra water in his body). But the most amazing thing happened there too: The fluid all went back into his blood vessels! As a result, he is no longer dehydrated and certainly much less swollen. And then the last and most important thing happened: For the first time in 10 days, he opened his eyes! He's not all there and definitely still has a long road in front of him but to see what has happened in the last 24 hours is more than I could have ever expected for day 16. Today I am going back to Las Vegas and entrusting him to the care of his extremely capable team here at UVa. It is sad for me to leave him because his care has been my constant and incessant obsession for 17 days. We have coordinated helicopter flights in stormy weather, sent spinal fluid and serum in unmarked boxes to Spain, pushed on at least a dozen doctors to push his care along as fast as possible, learned a whole discipline of autoimmune encephalitis, transferred the management of two international businesses and in the mean time learned a lot about what this family can do when we decide to stick together.

I am so proud of us as a family and him as the fighter that he is. His LifeTrek has taken a turn that none of us ever could have imagined but it is a hopeful one at this point. I'm sure one day you all will read about it in his next book. ;)

With love,

Bryn

An Update as of 9/14/12

Last evening Bob was put into a medically induced coma for what will likely be weeks and may be months while the firestorm in his brain has a chance to cool down. This was not unexpected. The experts in the kind of condition Bob has predicted that the storm of seizures that have been assaulting his brain could not be controlled until the immune suppression medications do their job. The seizures he has been having have been “subclinical” meaning that we cannot see anything in his behavior, but they show up on the EEG, and they did not subside despite being on high doses of three different seizure medications. Every few days they will lighten the sedation and check to see if he starts to seize again. If so, they will take him back into the coma to wait for a while longer. Currently he is quite swollen, but other than that, he seems to be resting quite comfortably.

The challenge is to keep Bob as healthy as possible under these very unusual circumstances. There are at least four teams working hard to take care of him: The ICU team of doctors, the Neurology team of doctors, the nurses, and his bedside care team. Now the job of our bedside care team changes a bit. We have to be fastidious with hand-washing because of his immune suppression. They already caught the beginnings of an infection when they put in the trach and put him on antibiotics. The nurses change his position every two hours, and the bed he’s is in can fold up into a chair-like position, so we are trying to sit him up a couple of times a day. Those of us on his care team (currently Bryn, Maura, and me) are doing what I call “ICU Pilates” to get his joints moving at least five or six times a day. When Bob is awake and living his normal life he is in nearly constant motion, so we try to make sure that his is not too still for too long. He also has leg squeezers on his calves to prevent clots and his bed can even pound his back to stimulate his lungs. He always wanted a massage chair and now he has a massage bed.

The results from the Mayo clinic all came back negative, deepening the mystery of what in the world has caused this all to happen to Bob. We may never know. Our last chance of perhaps getting some answers is from the samples we sent to Dr. Dalmau in Spain. They should be arriving there TODAY and will take 7-10 days to get the results. Dr. Dalmau does these tests free of charge for cases like Bob’s when all of the commercially available tests have come up empty-handed.

Things have stayed remarkably busy these past two weeks, managing Bob’s care. Yesterday for the first time I settled down enough to read a little bit of a (day-old) newspaper, and did a Suduko. I thought about starting to a book on my Kindle, but couldn’t focus beyond perusing the list of books we have there and thinking about what that says about Bob’s wonderful wide-ranging curiosity. Our biggest and most challenging job is to have patience with however long this healing process takes. I may try again to get started on a book later today. Then maybe next week some email and a little work. It is likely to be a long wait.

I am so, so grateful for all of the people who have stepped up to help. Today I am especially grateful for all of Bryn’s skill and tenaciousness in getting Bob the care that he has needed. I am also particularly grateful for Maura and Erika, who in addition to taking care of me have taken over our businesses so capably. And I am also grateful for all the people who are holding Bob in prayer. We are likely to need those prayers for some time to come. 

Megan

An Update as of 9/13/12

Hey there all. The overall happy news is that we have nothing big to report on Dad's health since the last post. That said, we have had a couple of tweaks. The first is that his seizures were not controlled on the medications that he was on before so we made the decision to deepen his sedation level in order to ensure that the seizures are controlled. This comes with some risk because he won't be moving much in the days to come but the benefit to his brain seems worth it. Hopefully this "cool down" time will help him be as best as he can be when he wakes up again. Also he had a very slight fever so he was started on antibiotics for bronchitis and he is already much better from that perspective. And lastly the preliminary studies of exactly which antibodies could be causing him to be so sick came back negative. That makes it harder to put a name on what has happened but the materials we sent to Spain should arrive tomorrow so hopefully they can help us shed some light on things. The developments of the last two days are not completely unexpected at all as we knew that these seizures associated with encephalitis are very difficult to control. Today hits 2 weeks since he got sick. If he gets better in the average time of 2.5 months then that means we are almost 25% through the sick time. I'm looking forward to when we can start reporting on the getting better part.

Bryn

An Update as of 9/12/12

Today was a day for attending to the business of making a temporary home in Charlottesville. We moved into our condo, ordered Internet (which was way more complicated than it needed to be), and spent almost two hours at the bank talking care of financial matters. Bryn spent most of the day at the hospital, having a number of conversations about weighing the pros and cons of different treatment options. But by far the very most important business of the day was the sending off of Bob's sample to the world expert in these kinds of conditions Bob has-- Dr. Dalmau in Barcelona, Spain. Dr. Dalmau has agreed to test these samples free of charge. We sent them off by FedEx and they are due to arrive in two days. 

Please pray that these tests will yield answers for Bob.

Megan

An Update as of 9/11/12

Friends,

We are getting settled in to our news digs at the University of Virginia Medical System. Bob's in room 6188 in the Neurology ICU. We are feeling very good about the whole medical team here. They are working very hard to understand Bob's condition, and there seems to be strong consensus as to the course of treatment.

Last evening Bob began the second level of treatment for his condition. He received the two medications that will suppress his immune system, and he was able to tolerate them well. For one of these medications, he will repeat the dose once a week for four weeks. The other one he will receive once a month for four to six months. It has become clear that this will be a long recovery process.

In light of that, this morning Bob had a trach and a feeding tube put in. This was hard news to take at first, but we now are feeling good about it because he will be more comfortable than on the vent.

Bob continues to be heavily sedated to try to control the seizures and let his brain rest and recover.

As his bedside team, there is not so much we can do at this point, except to place ourselves in his line of sight when his eyes are open, and talk to him in reassuring tones. We are being diligent with hand washing to guard against infection. Bob has been laying in a hospital bed for 12 days, and is quite swollen due to the steroids, so I am also asking my team to help me get him moving his limbs and joints at least three times a day.

One more piece of good news is that we think we have located a very nice two bedroom condo that is within walking distance of the hospital to rent. Jay Perry is my hero of the day for tracking that down.

We are being sustained by your continued love and prayers. Thank you for that. We are likely to need them for some time to come.

Megan

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

An Update as 9/9/12 PM

Last night Bob was successfully airlifted to the University of Virginia Medical Center.  There was a delay in order to allow a band of thunderstorms to pass, so Evan stayed at the hospital until 3:30am to see him off. I (Megan) am so grateful for the crew of people who flew to get him here safely. He has now settled into what will be his new home for awhile in the Neurology ICU, where the doctors are assessing his condition.

As I was planning to close up the house in Williamsburg for an as yet undetermined amount of time, I was supported by the caring of several people. My friend Becca had the forethought that I would need extra keys to the house. She had four made, and that turned out to be exactly how many I needed. Byron called and asked if I needed anything, just one minute after the thought had crossed my mind that I needed to drain and shut down the hot tub. I mentioned that to him, and within 15 minutes, it was done. The lawn needed mowing and Don sent two guys from his crew over to get it done. As I was out walking with Michelle and my new little grandbaby Everest (the BEST grandma therapy ever!), I thought I ought to give keys to a couple of additional neighbors and let them know that I would be away. Just as we walked past, both of them happened to be out in their yards, and I could give them the keys that Becca had made. This afternoon I came to rest a bit at the home of my friends Pam and Larry here in Charlottesville. When I went out for a walk to clear my head, Larry pointed me in the direction of some nearby woods. The woods is where I feel closest to God and I was nourished by that walk.

With so many small things falling so mysteriously into place, I have to trust that the big things are too, despite the immediate evidence to the contrary.

We are sustained by the prayers of so many people. Thank you for that. 

Megan

An Update as of 9/9/12 AM

Another prayer answered! Bob was transferred to UVA around 5AM this morning via life flight. According to the crew, he slept soundly during the entire flight. He is now resting at UVA, where he will begin the stage 2 treatment in the next few days. We are thankful that Evan was able to send Bob off from Riverside and that Megan was able to meet him at UVA.

We ask that you send prayers of blessing to the entire life flight crew and the staff at Riverside who helped care for Bob.

An Update as of 9/8/12

A hospital bed has opened up at UVA and Bob is now awaiting transfer via life flight. The current weather in Charlottesville is stormy, so we're waiting for the storms to pass before the flight is cleared for takeoff. It appears as if the storms are headed towards Williamsburg, so we may have to wait until they have passed through this area as well.

We ask that you pray for a safe flight for Bob and the entire crew. We also ask that you send prayers of healing out to the former patient at UVA whose space Bob will be taking.

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.

An Update as of 9/7/12 AM

I (Megan) am so blessed by Bryn’s tenaciousness and smarts! She has emailed four top neurologists with expertise in this kind of problem. Last night and this morning, they emailed back suggestions of what to do next. She compiled it all in a document and was trying to set up a conference call later today. When she called the office of the Riverside Neurology team, she got the run around. The office staff would not let her send the email or talk to the doctors. So she up and got in the car to drive over to their offices! She is really her father’s daughter and it is paying off! She is there now. We are waiting to see what conclusions they draw. Apparently, the experts think we need to move immediately to aggressively shutting down his immune system. Then we will have to be very careful to protect him from infection.

Just now he is resting quietly on the vent. The nurse has suggested that we keep the room very quiet and don’t talk to him or stroke him. They just want him to get some rest.

Keep praying for a productive collaboration between all of the doctors interested in his case.

Megan

 

An Update as of 9/6/12

Things have taken a turn for the worse for Bob today. He has been having multiple seizures all day long. It was decided that he must be placed back into a heavily sedated state. Megan called to inform me of this. She said that Bryn told her he was back to the state he was in on Monday evening. Bryn, Laurel, Breanne, and Grandpa are at the hospital with Bob. Megan is home alone.

Bryn has contacted premier neurologists at USC, Baylor, and U. Penn to discuss Bob's case with them. The leading research on this disorder is coming out of U Penn, so we're hopeful to get some direction from them.

An Update as of 9/5/12

Friends,

I (Megan) wanted to share a brief message with you regarding our hope of finding some underlying cause for the perplexing set of symptoms that Bob has been having would be found. This afternoon the team of neurologists who have been caring for Bob identified a particular auto-immune disorder that seems to fit what Bob has been going through, at the same time as a neurologist at USC who Bryn had consulted with came independently to the same conclusion. Bob has begun treatment and he seems to be responding. We are so grateful for the answered prayers for the wisdom of the doctors (including our own Bryn).

We still have a long road of healing ahead. The prayers we would ask for are that Bob will respond well to the treatment and have a full recovery.

Thank you for your sustaining care. We will continue to need it in the months ahead.

Megan

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. 

An Update as of 9/4/12

Today was a very difficult day. The EEG showed that he had 30 seizures this afternoon. He lost his ability to speak or communicate. He was just twitching more and more and looked terrified. Bob is now heavily sedated and on a ventilator. They plan to keep him resting like this for several days.

Bryn noticed as she was leaving this evening that the tests came back that it is not Lyme Disease and not West Nile. If they conclude it is a virus or a parasite, there may be little treatment. It will be just a matter of whether his body can fight off the infection. If we change course and decide it is an autoimmune disorder and we suppress his immune system and we guess wrong, it could be a disaster. Please pray for wisdom as we navigate the decisions we will have to make in the coming days. And that given the chance to rest that Bob’s body can do what it needs to do to heal.

I’m (Megan) looking at the white board in his hospital room and noticing that one of goals at the beginning of the day was to get out of bed and do some walking around. How quickly things can change.

An Update as 9/3/12

I (Michelle) just got off the phone with Bryn. They spoke to the neurologist who confirmed from the EEG that Bob is indeed having multiple seizures in a day. With the. Urgent medication he is on to stop the seizures, it is lessening the severity of the seizures, but not stopping them. On top of that, Bob is very anxious and scared, which is coming out in his slow or rapid breaths, arm and hand twitching, etc.

A decision was made to heavily sedate him and place him on a ventilator beginning tonight. This will allow him to rest comfortably for a few days until terry get the lab results from the Mayo Clinic. It will also hopefully give him time to rest and let the anti seizure medication do it's work.

Bryn believes he may have an infection of some sort, possibly West Nile virus, but one again she's not confident. He has low protein levels, which she said shouldn't Bettie for how much he works out and for how healthy he eats. This is perplexing to her. She became emotional when we told her that we trust her judgement and said, "I just dot know if I can fix him."

We're hopeful that this sedation will buy him some time to heal and that we get more direction on where we k from here upon getting the yet results back from the Mayo clinic. In the mean time it is imperative that we continue to send Bob and Megan uplifting thoughts. Bryn did not feel it was necessary for Evan to rush down. She anticipates Bob will need to be isedated through at least Thursday at the earliest.

An Overview as of 9/2/12

Friends,

I (Megan) am writing to ask for your prayers for Bob, who is in Riverside Hospital in Newport News in Intensive Care. Some of you know bits of the story and others don’t, so I’ll try to briefly summarize where we’re at and where we hope to be going.

On Thursday, August 30, Bob had a grand mal seizure at home and tumbled down a full flight of stairs. He was taken by ambulance to Riverside Hospital in Newport News. He had a second seizure while he was being evaluated in the ER. Miraculously, Bob not only survived his tumble down the stairs but didn’t even have any broken bones. Bob was admitted to the hospital, and in a move that probably saved his life for the second time that day, he was placed on the cardiac monitoring floor.

We didn’t know then and don’t know now what were the underlying causes of these seizures, but we have ruled out a few of the worst possibilities, like a brain tumor or a stroke. We are desperately seeking to solve the mystery of what could cause a healthy, vibrant 57 year old with no history of seizure to suddenly start to have seizures. He has had an MRI, 2 CT scans, an EEG, and EKG, and 2 spinal taps. The results we have so far point to what a healthy guy he is and don’t really solve the mystery. We are waiting for the results of some of the tests on the spinal fluid and blood that were sent to the Mayo Clinic. The leading contenders are Lyme Disease and West Nile virus or herpes simplex, and they have put him on the antibiotics and antiviral medications that would treat those. It could also be an autoimmune disorder, and in that case, the treatment would be steroids to suppress his immune system, which would run counter to trying to pump up his immune system to fight infection, so it is a little perplexing to know which way to go.

On Friday night (8/31/12), Bob’s heart stopped five times during the night, one time for the 21 seconds. That’s why it was so important that he was on the cardiac monitoring unit. He was moved to intensive cardiac care during the middle of the night. The fifth stoppage happened in the presence of the cardiologist on Saturday morning, who decided Bob needed a pacemaker immediately. And in another one of the myriad blessings we have to be thankful for, the cardiologist who implants pacemakers, who was supposed to be off for the weekend, was found visiting a patient in another room. He quickly assembled a team, with one guy driving in from Norfolk, and within the hour Bob had a pacemaker implanted. Bob was very talkative during the surgery, and even had the whole team laughing when he asked them if they could ramp up the pacemaker so that he could run his marathons faster. Friday afternoon he was much more like himself, and although there were significant memory problems we were quite encouraged thinking that we had determined the underlying cause of the seizures, which was heart synchopy, and that with the pacemaker that was going to be resolved.

Then he had another seizure and it broke our hearts.

That seizure meant that our celebration that we’d found the underlying problem were premature. And with each seizure there is  setback in terms of his mental functioning and memory. With time, he makes progress back to himself, but then another seizure comes along and sets us back again.

In the past two days, the seizures have continued, despite now being on three anti-seizure medications. We are still awaiting the results of tests that were sent to the Mayo Clinic, and they are doing some new tests as well to try to figure out why all this is happening. We still don’t know if we are on the right track to getting at the underlying cause, and it is proving to be more difficult to deal with the symptoms (which is what the seizures are) than we wish it were.

Bob’s cognitive functioning is quite limited, especially right after a seizure. Yesterday morning after starting the day with a seizure he was silent, sad, perplexed and scared. As the day progressed with no seizures he got to talking more and remembering a little bit more. But then he had more seizures last night and this morning. Today he can talk, but this morning it was like 50 first dates every five minutes. He would ask what day is it, and we would point to the calendar on the wall. He’d read September 3^rd, and say “That’s Laurel’s birthday.” Then he’d ask how long he’d been here and what had happened. Then five minutes later he’d ask again. Bryn finally wrote the answers to his main questions in a notebook, so he would read through it all and say “Wow!” Then a few minutes later, he would do it all again. He’s got his analytical brain trying to make sense of it all even in his very limited state, but we’ve tried to persuade him that we have lots of other great minds trying to figure things out, including Bryn, and that for him Job One is to rest.

Evan and Bob’s dad have been here with me, and I don’t know how I could have gotten through these first few days without them. Bryn arrived last evening which has also been really wonderful. The staff here at Riverside have been terrific in their care and in being willing to explain things to us, but it is wonderful to have someone who can understand all of the medical information and participate in the sensemaking with the doctors. I’ve been holding up pretty well, trying to keep things positive and calm for Bob. They days are remarkably busy with supporting Bob and interacting with the various doctors and nurses who are caring for Bob. Even writing a text or an email can take several sessions. There have certainly been poignant moments that have broken our hearts and reduced us to tears, but we hug one another and get through it. Last night they insisted that I let Bryn spend the night at the hospital and that I go home and get some rest. That was really hard. Being away from the hospital, the enormity of the situation really hit me. But then Bryn called me from the hospital and helped calm my sense of overwhelm, so I was able to get some sleep. I really had some compassion for how hard it has been on those who have been loving Bob and caring for him from afar.

What they are telling us is that Bob can be restored to his previous functioning but that it may take some time. This is likely to take weeks and even months. Some parts of our life will be permanently altered, but the exact prognosis depends on finding the cause. If we could figure out what was causing all this, it would help to make sure Bob was getting the appropriate treatment. The test results that are due to come in over the next day or two should help. The neurologist told Bob he was the most interesting case in the hospital. He has always been an interesting guy, but this is a kind of interesting you’d rather not be.

I would ask for you to continue to keep Bob in your prayers, specifically that we find a underlying cause and an effective treatment plan. When Bryn called from the airport yesterday to tell him that she was on the way, he said in a very Bob-like way “We’ve got to stay hopeful.” Even as his condition seems to be getting worse and worse, that’s what we are trying to do.

Megan

Please feel free to pass this message along to others you know who know and care about Bob.