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.