Date sent: 10/11/99 06:50 PM
Subject: We're Back....
Good Morning!
It has been a couple of days since I have written because the transitions were so time
consuming. I promised Dan last night though, that I would get something out. He is anxious
for you to know his progress.
First, the transition from Spaulding MVH went basically as expected, it was just an
incredibly LONG day... The only real glitch was that, in my ever-present drive to be more
efficient, I asked Eleanor to mail home a bunch of stuff for us so that I didn't have to
carry it all. Unfortunately, included in that stuff was Dan's wallet and photo id, which
is absolutely necessary to get on an airplane.... So, at the last minute before we were
supposed to leave Spaulding, the chair-car driver is saying both "get in and we'll
just go... " and "there is no way you will get on the airplane without
it...", the case manager, Denise, says "use the id bracelet, we wouldn't have
put it on you if we didn't know who you were, they can call me, and I will describe him to
them....", I am making alternate plans in the back of my mind ("if they don't
let him on the plane... maybe I will rent a car... we have to get home..." and
"I wonder where that box is now and can they Fax his id to us??)... In the end,
Denise called the airline and they said that a photograph that was notorized was good
enough. So, we took a polaroid, waited for the notary to do her thing and we were off...
THANK YOU DENISE, MIKE, KAREN AND DR. BUNTING for getting us out the door, and on the
plane!
So, once we got to the airport, we got everything settled, and then waited more than an
hour to board the plane. We were able to use the public restroom before we before we
boarded. Dan had a little difficulty staying comfortable, so we got extra pillows, and
moved them frequently.
Ron Schmidt met us at the airport. Even though I mailed a lot of stuff home, we still
had a lot of stuff to manage, but we got Dan to the car and got some Wendy's to eat on the
way to MVH. Dan and I were both able to nap in the car on the way home.
We arrived at MVH around 3:00 ish, but by the time we got Dan into a bed, interviewed
and settled, it was around 5:00.
OK, Some first impressions of of MVH.
Ok, some impressions aren't exactly "first" because we have been to MVH many
times...just to different parts. I guess that makes these observations, first impressions
of the rehabilitation unit.
MVH is much newer than Spaulding, so the rooms are bigger... the double room has about
50% more room than the ones at Spaulding and a bathroom with a shower... painted more
cheerfully. There are many "patient friendly" components to the unit. For
example, the unit is a square with the nurses station in the middle. There is a large
common room in the middle that contains some rehab equipment, round tables for dining and
talking, a snack area where patients and families can help themselves, and a games-area
with puzzles, toys, nintendo and an inflatable skeleton! All the therapy units are on the
same hallway, which is adjacent to the area with the patient rooms. Although there are
some elder (stroke or amputee) patients, most appear to be younger adults.
Another really nice patient-centered touch is that they put the scedule for the week on
a calendar inside a page-protector which is attached to the patients wheel chair. This is
important because they do therapy in half-hour increments and the patient is responsible
to get there, if they are able, like Dan is. Also, when we told them about Dan's regular
naps, they put that into his schedule... which we really appreciate.
The doctor who examined Dan at the intake started by giving Dan a very standard speech
about how unpredictable recovery is from a "brain injury" - including one caused
by tumor removal. I asked him if I could share what I knew about Dan in particular from
the surgeon... I told him all that I knew about what was removed, what is known to be
still in tact, Dr. Black's experience and equipment. He seemed to take all that in, but
said he didn't think that changed anything he had just said, but maybe meant Dan had a
larger percentage of useful cells (as opposed to dead cells) available. Then, when he
examined Dan, he was more convinced. He asked Dan to move his toes, and HE DID! We
exchanged looks and said, "that's a first", the doc said "we'll take
it..." - we said "you bet!"
The most challenging part of the exam were cognitive questions, higher order thinking
and processing. The frontal lobe is what is immediately in front of the motor area, so
clearly there was some damage there as well. Dan's personality, and basic knowledge base
are in tact, but he is having problems with word retreaval and mental manipulation...
Apparently, this has to do with concentration, the ability to hold several pieces of
information and then manipulate them in his mind and then give out the appropriate answer.
I have seen this skill also improve with time, but I think that it is very scarey for him
to hear himself not be able to answer questions he knows full well he would ordinarily be
able to do.
So, that was Tuesday.
On Wednesday, Dan had already had a PT and both his OT sessions by the time I arrived.
He had found that he could lift his arm, and he could lift his knee... both
volitionally!!!! Later, during his second PT session, we walked together in the hall, no
brace, no cane, just me holding him slightly... He is really almost there. He also worked
on steps, he was able to go up 3 steps leading with the right, and then leading with the
left. The PT supported his middle, but he did the rest! The other thing she had him do,
which I liked very much, was to try to use his left arm in ways that it would really be
used... for example, when he stood up, she had him put his left arm in position to push up
on the wheel chair armrest, and shift his weight so the arm needed to help... She was very
impressed with his progress. She said that from the notes, she thought he would be much
less capable. The notes from Spaulding were not inacurate... but, just within the day it
took to get from Spaulding to MVH, he has begun to regain so much function. Even Dan is
being forced to admit he is finally getting better!
Since I missed the OT sessions, I can only say that he worked on bathroom transfers and
then stitching... Mike M. or Kathy S., can you explain why he needs to do sewing? Is that
about concentration? He didn't know why he was doing the things he was asked to do, but he
enjoyed it anyway.
In his speech evaluation, he was tested on reading, writing, spelling, arithmetic,
logic, sequencing, short-term memory, pronunciation... Again, he had some problems with
the mental manipulations, and left side attention (he skipped several math problems on the
left side of the page... but as soon as she brought his attention to that, he was able to
attend better on the next work sheet.) And, the things he was able to do were more
detailed than the things he had been able to do just a few days ago at Spaulding... so
there is hope here too.
Both Tuesday and Wednesday the kids were able to come to the hospital to see Dan. They
are thrilled at the differences that they see, and they love the wheel chair and the
nintendo! Zachary is getting a little frustrated having all his time planned up... so we
will work on that next.
Also, we came home to a houseful of food, so I was able bring Dan some "real
food" for lunch. It was great to have fresh from the garden salad and home made food
to nourish his soul as well as his body.
With love and hope, Abi and Dan
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