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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