Home Sweet Home! We returned home late yesterday afternoon and it is
wonderful to be back in our own home once again. Bob cried tears of joy
and gratitude to be back in our own setting. Last night we slept in
our own bed and today we are catching up on mail and email and work that
had been set aside since we left for what we thought would be a week's
vacation three weeks ago. It is amazing how wonderful "ordinary life"
can feel after spending time in the nether world of the hospital.
We
are so grateful for the care and support that we have received during
this crisis. We pray that Bob's brain and his body will continue to heal
in the days and weeks ahead.
Lots of love, Megan
Friday, August 14, 2015
An Update as of 8/12/15
Oh Happy Days! After 2 weeks in 3 hospitals, 2 ambulance rides, 3 CT
scans, 2 MRIs, IVs, heart monitors, a feeding tube, and a week spent
with wires glued to his head, and repeatedly being quizzed on what day
it was and who was the president, Bob was finally discharged from the
Cleveland Clinic last evening!!
After a whole afternoon of delays of one kind or another, the last thing to be done was to remove the EEG wires that had been glued to Bob’s head for a week and were itching like crazy. At that point, Bob took matters into his own hands and began pulling the wires off himself! That got the staff to come running, but by the time they got there he had them all off and all that was to be done was to soak away the glue.
Bob was very happy to be out in the world again, and I was very happy to have him be so much his old self, when that had at one point been very much in doubt. We had a nice dinner at an Italian restaurant while we waited for his prescriptions to be filled. When we got home to Bob’s sister’s Laurel’s house, Bob headed straight for a hot shower, a blessed pleasure of modern life! After that, we were both ready to turn in early as it had been a good but intense day.
The other happy news of the day was that Bob’s dad was also discharged from his hospitalization. So we were doubly blessed!
We plan to leave for Virginia in the morning and to stop in Charlottesville, where Bob has a four-hour assessment that was previously scheduled for Thursday morning. This is the same assessment that Bob did yesterday that ended up taking most of the day. But with these two assessments done, the two teams of neurologists who will be assessing to see if he is a candidate for the latest technological intervention will have the information they need for his case to go before the respective panels, one at UVA and the other at the Cleveland Clinic. So far, the increased meds Bob is taking have stopped his seizures, so we are grateful and relieved as we await the news of what the panels of doctors think can be done next.
Thank you, thank you, thank you, for all of your prayers, good thoughts, and kind words. They have buoyed and supported us through this crisis.
Megan
After a whole afternoon of delays of one kind or another, the last thing to be done was to remove the EEG wires that had been glued to Bob’s head for a week and were itching like crazy. At that point, Bob took matters into his own hands and began pulling the wires off himself! That got the staff to come running, but by the time they got there he had them all off and all that was to be done was to soak away the glue.
Bob was very happy to be out in the world again, and I was very happy to have him be so much his old self, when that had at one point been very much in doubt. We had a nice dinner at an Italian restaurant while we waited for his prescriptions to be filled. When we got home to Bob’s sister’s Laurel’s house, Bob headed straight for a hot shower, a blessed pleasure of modern life! After that, we were both ready to turn in early as it had been a good but intense day.
The other happy news of the day was that Bob’s dad was also discharged from his hospitalization. So we were doubly blessed!
We plan to leave for Virginia in the morning and to stop in Charlottesville, where Bob has a four-hour assessment that was previously scheduled for Thursday morning. This is the same assessment that Bob did yesterday that ended up taking most of the day. But with these two assessments done, the two teams of neurologists who will be assessing to see if he is a candidate for the latest technological intervention will have the information they need for his case to go before the respective panels, one at UVA and the other at the Cleveland Clinic. So far, the increased meds Bob is taking have stopped his seizures, so we are grateful and relieved as we await the news of what the panels of doctors think can be done next.
Thank you, thank you, thank you, for all of your prayers, good thoughts, and kind words. They have buoyed and supported us through this crisis.
Megan
Saturday, August 8, 2015
An Update as of 8/8/15
Bob is continuing to make progress. Yesterday they
increased the dose on two of his meds because he’d had five small
seizures during the night and two in the morning. These were too small
for Bob to feel but they showed up on the EEG. One of these meds revs
him up and the other calms him down, so they kind of cancel each other
out making Bob just a little bit slap happy. J
Since
the increase, Bob hasn’t had any more seizures (other than a little ten
second “blip” this morning). This is good news because going seizure
free for 24 hours is one of the criteria he has to meet before they will
discharge him. We are planning to stay through Monday
morning because the doctors here went to bat for him and were able to
schedule as an inpatient the final assessment that Bob needs to be
evaluated for the NeuroPace surgery. If we didn’t do it now, we would
have to wait for months and have to come back to Cleveland to get it
done later.
The
blessing to come out of the terrible care that Bob received at Buffalo
General that caused us to transfer to the Cleveland Clinic is that Bob
is now being assessed by two of the top neurology teams in the country
to see if he might be a candidate for the NeuroPace implant, both here
and at UVA. The NeuroPace is a brand new technology that is like a
pacemaker for the brain that uses smart technology to learn when his
brain is about to cook up a seizure and then sends a small jolt of
electricity to try to disrupt it. Ironically, Bob is scheduled to
complete the same assessment he’ll have here on Monday at UVA on Friday. That will also complete his battery of tests there as well.
Life has gotten just a bit more complicated here because on Thursday
evening we rushed Bob’s Dad to the ER with what turned out to be a
partially obstructed bowel. They anticipate that it can be treated
without surgery, so Laurel and her husband went ahead and left for a
long scheduled Alaskan Cruise yesterday morning. That means that I am
staying at Laurel’s house and dividing my time between the two
hospitals. Yesterday, when I started to feel stressed when I got caught
in traffic going between the two, I reminded myself that my role is
really just to provide comfort and company so I didn’t have to keep to
any particular schedule. That helped me to relax and just go with the
flow.
Two
of Bob’s cousins helped out by going to see Dad yesterday and today,
and Alice Klagge, the mom of Bob’s best friend from HS, came to visit
Bob this morning. I’m hopeful we’ll have both of them out by Monday. If Dad were not sick, we might have headed home on Monday night or Tuesday,
but now I think we will stay for a few more days to make sure he is OK,
since Laurel is away. I hope to head to Charlottesville on Thursday so Bob can have his assessment on Friday.
Thank you for your kindness, care, and prayers.
--Megan
Tuesday, August 4, 2015
An Update as of 8/4/15
Today was a good day. Bob was transferred to the Adult Epilepsy Monitoring
Unit, where he has a private room that is almost like a hotel room. He is
so much more like himself than I could have imagined a week ago! They have
added in a new rescue medication, which he has needed due to still some
increased seizure activity, and ended up leaving his other two anti-seizure
meds at the same dose he has been on. We are hopeful that that the seizures
he is having now will settled down over the next few days and we can start
making plans to head back home by the weekend or early next week.
Although his memory is still quite impaired, Bob is seeming so much more
like himself that I thought you would enjoy hearing how he is doing right
from him. So the rest of this post is from him.
With so much gratitude for your love and prayers, Megan
Blessings upon blessings. It's hard to believe how fast things can turn
around. From a relative sense of normalcy and health to a discouraging sense
of abnormalcy and disease (interesting word: "dis-ease" or literally a "lack
of ease"). Wow, have I had that over the past two months. And now with an
emerging sense of normalcy once again.
Not sure how this all came about, but I am back to hospital rooms and
treatment plans. Let's start with my first, never-ceasing request: to hold
up my family into the light. They are with me through it all, with no loss
of memory. My brain forgets it all. They remember it all. What a hard thing
to experience and remember. Epilepsy.
It is my hope that through this time at the Cleveland Clinic, we will find
new and better treatment options. There are surgical interventions that can
learn to recognize and head off seizures at the pass. Wow. I hope we will
find them and they will find us.
I also hope that a sense of normalcy, however slight, will come upon my
family again, sooner rather than later, and will stay with us longer rather
than shorter. Your thoughts, hopes, and prayers are a big part of the
equation. Please may your energy help to make it so. Love you. Bob
Unit, where he has a private room that is almost like a hotel room. He is
so much more like himself than I could have imagined a week ago! They have
added in a new rescue medication, which he has needed due to still some
increased seizure activity, and ended up leaving his other two anti-seizure
meds at the same dose he has been on. We are hopeful that that the seizures
he is having now will settled down over the next few days and we can start
making plans to head back home by the weekend or early next week.
Although his memory is still quite impaired, Bob is seeming so much more
like himself that I thought you would enjoy hearing how he is doing right
from him. So the rest of this post is from him.
With so much gratitude for your love and prayers, Megan
Blessings upon blessings. It's hard to believe how fast things can turn
around. From a relative sense of normalcy and health to a discouraging sense
of abnormalcy and disease (interesting word: "dis-ease" or literally a "lack
of ease"). Wow, have I had that over the past two months. And now with an
emerging sense of normalcy once again.
Not sure how this all came about, but I am back to hospital rooms and
treatment plans. Let's start with my first, never-ceasing request: to hold
up my family into the light. They are with me through it all, with no loss
of memory. My brain forgets it all. They remember it all. What a hard thing
to experience and remember. Epilepsy.
It is my hope that through this time at the Cleveland Clinic, we will find
new and better treatment options. There are surgical interventions that can
learn to recognize and head off seizures at the pass. Wow. I hope we will
find them and they will find us.
I also hope that a sense of normalcy, however slight, will come upon my
family again, sooner rather than later, and will stay with us longer rather
than shorter. Your thoughts, hopes, and prayers are a big part of the
equation. Please may your energy help to make it so. Love you. Bob
An Update as of 8/3/15
Bob continues to rest and recover. He had a relatively short seizure yesterday but was confused afterwards for longer than usual, which makes me think that his brain is still recovering from the terrible seizure on Wednesday. He also had two more during the night that left him confused and anxious.
The medical team here thinks that Bob has been overmedicated, and that this is what led to the spiral of events that landed him here. Bob is apparently a fast metabolizer of his meds. But every time we see a new doctor, their eyes pop out when they see the doses of the two anti-seizure meds Bob has been on. He has been well above the FDA recommended limits, which has worried Bryn all along. The doctors here think that these high doses have been counterproductive and may have actually been contributing to seizures. We don't expect to get much better seizure control with the lower dos but hopefully not much worse, with fewer side effects. We will also proceed with an evaluation for possible surgical options, which is a process that we had already begun with out neurology team at the University of Virginia.
Thanks for your continued prayers. We will need them as we move into this period of med transitions that will likely involve more seizures. There is a simple prayer that I pray when I am anxious or upset that I would ask that you pray for Bob:
May he be safe
May he be well
May he be peaceful and at ease
Thank you for your love!
--Megan
The medical team here thinks that Bob has been overmedicated, and that this is what led to the spiral of events that landed him here. Bob is apparently a fast metabolizer of his meds. But every time we see a new doctor, their eyes pop out when they see the doses of the two anti-seizure meds Bob has been on. He has been well above the FDA recommended limits, which has worried Bryn all along. The doctors here think that these high doses have been counterproductive and may have actually been contributing to seizures. We don't expect to get much better seizure control with the lower dos but hopefully not much worse, with fewer side effects. We will also proceed with an evaluation for possible surgical options, which is a process that we had already begun with out neurology team at the University of Virginia.
Thanks for your continued prayers. We will need them as we move into this period of med transitions that will likely involve more seizures. There is a simple prayer that I pray when I am anxious or upset that I would ask that you pray for Bob:
May he be safe
May he be well
May he be peaceful and at ease
Thank you for your love!
--Megan
Sunday, August 2, 2015
An Update as of 8/1/15
Today was mostly a day of resting and continuing to recover. Bob also had more tests. It is reassuring and refreshing to wok with doctors who seem genuinely interested in solving this mystery, who are interested enough to listen to the whole story and to gather what information they can from the records I have kept from the beginning. One current theory is that the digestive problems Bob has suffered for the past two months caused him to get dehydrated and then for his med levels to get out of balance and to cause all of these problems.
Our assembled family have all dispersed. Bryn and Evan and their families are all home safely and Maura and her family are back on the farm. We are now being supported by Bob's Dad and his sister, Laurel, as well as other loved ones here in Cleveland..
Although our vacation plans were interrupted, I feel incredibly blessed that this crisis happened at a time and place where I was surrounded by so much love and support. We'll see what the coming days hold, but I am much more optimistic that sooner or later Bob and I will be able to get back to the life we've enjoyed so much.
Bob was tearful this evening as I shared with him some of the messages of love and support we've received. I'm grateful for the prayers for Bob's healing and for the wisdom of the doctors, because things seem to be turning around in an amazing way.
Lots of love, Megan
Our assembled family have all dispersed. Bryn and Evan and their families are all home safely and Maura and her family are back on the farm. We are now being supported by Bob's Dad and his sister, Laurel, as well as other loved ones here in Cleveland..
Although our vacation plans were interrupted, I feel incredibly blessed that this crisis happened at a time and place where I was surrounded by so much love and support. We'll see what the coming days hold, but I am much more optimistic that sooner or later Bob and I will be able to get back to the life we've enjoyed so much.
Bob was tearful this evening as I shared with him some of the messages of love and support we've received. I'm grateful for the prayers for Bob's healing and for the wisdom of the doctors, because things seem to be turning around in an amazing way.
Lots of love, Megan
Friday, July 31, 2015
An Update as of 7/31/15 PM
What a difference a day makes! Our friends at Good News Church used to regularly pray a prayer of gratitude to God for "waking me up in my right mind." It is an easy thing to take for granted. Today Bob is much closer to being in his right mind. He is drowsy and periodically falls asleep mid sentence , but when he is awake and talking he makes sense. He has reported hallucinations throughout the day, by has recognized them as such. He is not delirious like he was. He is asking question to get oriented and he is forgetful, but much more like the Bob we all know and love.
Thanks for your prayers and love. They're working! Now we just need to solve the mystery of what got us to this point so we can solve the underlying issues.
--Megan
Thanks for your prayers and love. They're working! Now we just need to solve the mystery of what got us to this point so we can solve the underlying issues.
--Megan
An Update as of 7/31/15
We are feeling cautiously optmistic today. Bob was transferred through the night to the Cleveland Clinic. Bob's dad was a trooper and not only oversaw the transfer process but rode in the ambulance through the night. They arrived at the Clinic early this morning, where they were met by Bob's sister and her husband. We are already experiencing a dramatic difference in the quality of care. Bob is also doing better. He has had moments of greater lucidity. The doctor we spoke with said he was "an interesting guy," which made us laugh. But the team does seem to be genuinely interested in the complexities of his case.
We are buoyed by the outpouring of love, prayers, and support we are receiving. I am currently back at Chautauqua to get packed up from our interrupted vacation but drinking in the love of our extended family gathered here and being nourished with delight in our grandchildren.
Megan
Thursday, July 30, 2015
An Update as of 7/30/15
Yesterday was a difficult day. Bob had a terrible seizure in the morning that lasted more than an hour. Now almost 24 hours later he is still delirious. The miracle we are praying for is that the damage is not permanent. We are waiting for a bed to become available at The Cleveland Clinic, in order for him to be transferred there.
We continue to be grateful for your prayers and loving thoughts.
--Megan
We continue to be grateful for your prayers and loving thoughts.
--Megan
Wednesday, July 29, 2015
In Need of Prayer Once Again- 07/29/15
Friends, we are once again activating this blog to provide updates on Bob's condition, which has recently taken a turn for the worse. Bob is currently in the Buffalo General Hospital. He has been suffering from digestive complaints for the past two months, and his increasingly not seemed like himself. We are on vacation with our extended family in Chautauqua. On Monday, he collapsed while out walking at Chaitauqua and was repeatedly vomiting, so we took him to the ER in Jamestown, NY. There they discovered that his white blood cell count was nearly zero and he essentially had no working immune system-- which is quite dangerous. So he was transferred here to Buffalo where he could get more specialized care. He is getting good care here, although the underlying cause of all of this is still a mystery. We'll keep you posted as we know more.
Today (Wednesday), he is sedated after a strong seizure and they have put him on a feeding tube. They are keeping him in the neurology ICU until they know more.
Please pray for wisdom for the doctors and healing mercies for Bob.
-Megan
Today (Wednesday), he is sedated after a strong seizure and they have put him on a feeding tube. They are keeping him in the neurology ICU until they know more.
Please pray for wisdom for the doctors and healing mercies for Bob.
-Megan
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