Update Thursday August 11, 2016

We have happier news to report today.  The new setting on the Neuropace seems to be doing the trick.  Bob has now had two seizure free days!  We are hoping that we are on a roll and can keep up this good progress.  Thank you for all of your prayers.  We are feeling very held in your love and concern.   Bob got a haircut today and even with a close crop, the scars of his incisions are looking good and not too noticeable. Lots of love, Megan

Update Monday, August 8

We saw our neurologist at the University of Virginia today and we are feeling a little more optimistic.  Apparently when they turned the Neuropace device on last Tuesday, they had a choice to start the settings at either 0.5 or 1.0.   Tiara, the Neuropace engineer who will now fly to Charlottesville from Charlotte NC to be at all of our regularly scheduled doctor visits, and Dr. Fountain discussed it and decided to begin at 1.0.  Unfortunately, that seemed to have irritated Bob's brain and resulted in more and more intense seizures this past week. So Dr. Fountain moved the setting back to 0.5.  We are hoping that Bob does better at this level.  Bob did not have any seizures yesterday and so far has not had any today.  We're feeling hopeful that this will do the trick. If not, they will turn it off completely for a period of time to let Bob's brain rest and recover and then try again, starting at 0.5.

It is reassuring to know how many people are pulling for us and lifting up healing prayers for Bob. Thank you for your caring and prayers.

lots of love,

Megan

Updte August 6, 2016

We are standing in the need of prayer. Bob has gotten off to a rough start with the Neuropace.  He has had either one or two seizures strong enough to take him to the floor each of the five days since the Neuropace device was turned on. This is a significant increase in both the number and severity of his seizures.  We read in the literature on the Neuropace that for some people, the device actually makes their seizures worse.  We are hoping and praying that this is only temporary, that it is just a matter of needed adjustments to the settings and that things will settle down again soon.  We are heading back to see our neurologist on Monday and hope that the changes he makes get us back on the path to improvement in Bob's seizure activity. Please keep Bob in your prayers.

Megan

Update Aug. 2, 2016

Today was a big day! Bob had the staples and sutures from his surgery removed, and the doctors turned on his Neuropace device so that it can begin to disrupt seizures as they begin.  It has been a journey of more than a year and a half since Laurel's friend MaryLou Teare noticed a story in the Cleveland Plain Dealer about a woman with epilepsy who had the Neuropace device implanted as part of the clinical trials.  MaryLou wondered if it might be something that would benefit Bob, and passed the article along to us.  We are so excited to finally have it in and working!  There will still be some fine tuning over the coming months, but we are hopeful Bob will respond well.  Just this evening, Bob had the feeling that a seizure was starting but it did not develop into a full seizure. So the device may have vanquished its first seizure already!

We are so grateful for all of the love and support we have received over the course of his illness.  Thank you, each and every one of you.

Update July 20

There's no place like home! Just two days after brain surgery, we are home again, and Bob no longer even has any bandages on his head! This afternoon, Bob has not even wanted any pain medication other than Tylenol. The quickness of all of this just seems surreal!  We've already fired up his new dedicated NeuroPace laptop, downloaded the data from the device to the computer, and uploaded those data to the cloud. Paul Simon was right. These truly are the days of miracle and wonder! We are grateful for the ways that your thoughts and prayers have supported this miracle! Now we will pray that Bob is among those the NeuroPace researchers call "responders", meaning that over time he has a substantial reduction in his seizure activity.

Update Tues. July 19

Bob continues to recover well. He was moved from ICU to the regular floor this morning. He is resting and regaining his strength. We are on track to head home tomorrow! Thank you for your love and prayers.

Update Tues. July 19

Bob continues to recover well. He was moved from ICU to the regular floor this morning. He is resting and regaining his strength. We are on track to head home tomorrow! Thank you for your love and prayers.

Update Monday July 18 4:00pm

We are with Bob in the ICU. He is talking and making jokes. Everyone seems to feel with his progress.  The current plan is that he will stay here in the ICU overnight. Then we'll see how he is doing tomorrow and determine the plan from there. We are breathing a big sigh of relief! Thank you for your prayers. Keep them coming for continued healing over the next hours, days, and weeks.

Update Monday July 18 1:00pm

We just got the news that Bob has come through the surgery well and he is now in recovery. Both the neurosurgeon and our neurologist came to see me to let me know that they were pleased with how it went. Bob will be moved to the ICU to stabilize for the rest of the afternoon and then will probably be moved to the regular neurology floor this evening.

Thank you for all of your thoughts and prayers. We are blessed that everything has gone very well so far, and the worst of it seems to be behind us.

Megan

Update July 17, 2016 Neuropace Surgery

Bob is scheduled to have brain surgery to implant the RNS NeuroPace device early tomorrow morning. We will arrive at the hospital at 5:30am and he will go in for the surgery about 7:30am.  The surgery should take two to four hours. They will cut a hole the size of a silver dollar in Bob's skull which is where the pacemaker will sit and there will be two electrodes that go into his brain to lay alongside each hippocampus. After the surgery he will go to ICU until he is stabilized. He is only expected to stay in the hospital one or two nights, then we will be back home. We are grateful for your thoughts and prayers.
Megan

An Update as of 2/16/16

I just wanted you all to know that Bob is doing amazing well.  He has a little row of staples on both sides of his head, that he does not even keep covered.  But he is not in pain or taking any pain meds.  He is pretty much just back to his regular routine.  It is astonishing that someone could take both sides off his skull, drop in 124 electrodes, leave them in for over a week, then take them out, sew things back together, and after two or three days of discomfort Bob could basically be back about his business!  The human body is an amazing thing and the medical profession is amazing as well!

Thanks for sharing in this adventure with us.  The concept of it has been much more frightening than the reality of living through it.  Hopefully, this will give us more courage for the next steps, whatever they turn out to be.

All the best,

Megan

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