Good evening fellow travelers...
As I flew back to Ohio in the small American Eagle, I was painfully
aware of the empty seat beside me. As I left the hospital this
morning, Dan was just finished with a seizure, still shaken, and
wishing that he was going home.
By the end of the day though, it seemed like it was a good choice
for him to stay and he was doing well.
Eleanor reports that he showered in the morning and ate well
for both breakfast and lunch. This was an improvement step, as
the last several days he has had no appetite, and had eaten very
little.
He also had two long conversations with the epileptologists.
The first, an epilepsy fellow, took a long detailed history and
a neuro exam; and got a good sense of where Dan is today. His
main conclusion was that the infection is Dan's primary issue,
and that the current goal of seizure management is to make him
as stable as possible so that he can heal from the infection.
He said it was important for Dan to not have generalized seizures
and that the medication recommendation would reflect that. He
said that he would send his attending later in the day. When the
attending came, her recommendation concurred with the fellow's...
stop the seizures and let him heal in the short term, and then
reasses the overall seizure medications later as a longer term
goal.
So, that's what they did, they tweaked his seizure drugs. They
also changed the timing a bit to make it on a more human schedule
(ie 8 and 8 rather than 2 and 2, etc...)
Eleanor was there with him for both of those meetings. She was
able to "debrief" with him afterwards to help make sense
of what happened, and help him find decisions that were comfortable.
During our dinner in YS, we called Dan and he felt well enough
to talk on the phone with both Hana and Zac, for more extensive
conversations.
Sunday, he had the worst headache of his life, not relieved by
tylenol or percoset and finally agreed to take morphine...His
neurologic exam was stable, and he had a stat CT, which was negative
(good sign). Today, his headache was relieved by percocet and
he was able to walk around two times. Earlier in the day he had
had blurry vision but that too was better later in the day.
When I spoke to him at bed time he was discussing all his medication
changes with the nurse, so that he could understand all the changes
made. And, he was still waiting to see Dr. Black. (Aside: Charlie
and Anne had the opportunity to meet Dr. Black on Saturday. Charlie
told him he was famous in Brooklyn... to which Dr. B replied "it
must be because my son lives there..." Later Charlie said
"I was tempted to get up and look for his wings, but I thought
he might not like that..." I have often felt the same way
about him!)
Eleanor and her husband Jeff will be with Dan until noon tomorrow.
Yesterday, I wrote to some of the Easterners on the list and asked
for volunteers to visit with Dan. His friend Simon from New York
is coming up to see him Wed thr Fri. Jonah offered to come, but
in the end decided he would wait a few days to decide. Other visitors
are still welcome.
As for Hana, Zac, and me... we had a snuggle fest and ate dinner
in our pajamas. We read The Blue Sword and talked for a long time
about Dad. We don't know when Dan will come home, but decided
that we could all go get him if he is still there over the weekend.
Or maybe they will stay in YS with Nancy. Like all other factors,
things change daily around here.
So, after all is said and done today, I believe progress was
made and there is an inkling of peace amid the swirling change.
With love and blessings,
Abi and Dan