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
We continue praying from SpiritWorks. Love and hugs to both of you.
ReplyDelete[Michelle is off the grid this week, camping, so I am posting the latest update here until she gets back and can put things right.]
ReplyDeleteOh 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
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.
ReplyDeleteWe 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