Date sent: 11/04/99 09:30 AM
Does any one have a nickel????

I sent this to just the parents yesterday, so I thought I could use it again this morning and start from there. The subject of this message relates to some some anti-tax (maybe?) song where they raised the price of the train ride (in Boston, no less) while the guy was on the train so he could never get off. Eventually, his wife just fed him sandwhiches through the window, and he never returned. Both of Dan's parents (independently) reminded him of this song, at different times, in this journey.

>Date: Wed, 03 Nov 1999 13:39:19 -0500
>To: phyllis, phil, dad >From: Abi Katz-Stein
<abiks@erinet.com> >
Subject: Does any one have a nickel????
> > >Because we can't seem to get off this train!
> >The infectious diseases fellow was by, and she said that they are going to recommend to the neurosurgery team to take the shunt out. She said that bacteria loves plastic, and that it will be harder to cure this infection with the shunt in. I said that Dr. Black had put it there to use to drain again if we needed to. She said it is possible he will want to drain again because the cyst on the latest MRI is pretty large (2 to 3 inches across) and then maybe take it out at the same time. Ultimately though, she says it is the call of the neurosurgery team what is the best thing to do is... leave the shunt in or take it out, or go ahead with a full craniotomy to resect the entire cyst. In terms of the infectious diseases perspective, the cyst can be left in, and the antibiotic will shrink it, but it won't go away. At some point it becomes a "sterile, benign cyst." When we asked about the benefit of complete removal she said that would be better, and that then they would have more confidence that the six week course of antiobiotic would be a complete cure. Actually, she also said that they think either way, antiobiotics will provide a complete cure.
> >So, now the questions for Dr. Black are, what does he recommend based on the the current cyst size? Would complete resection provide Dan a better outcome, especially in terms of return of movement? Will any of this make matters worse?
> >Do any of you have any other questions we should ask?
> >Sigh,
>Abi and Dan

We spent the day fretting that it seemed likely he would need another surgery... maybe even a craniotomy... (all before Dr. Black actually came by to talk to us...) trying not to totally lose it before having all the facts. We have had this tendendcy to sink to incredibly base humor in these moments, and yesterday came up with one of the worst... "guess you had to be there..." kind of jokes, ready?

Q: How many craniotomies does it take to change a light bulb? A: Three. If you want to use you left hand to do it.

Ok, so, after the Black Humor enters Dr. Black.

He says... here's the dfference between surgery and medicine in perspective. The ID's (infectious disease docs) are afraid that the bacteria will grow on the plastic. Dr. Black says, not only will it help to drain the cyst (did I mention already that the cyst had already refilled to about 2 to 3 inches across?), he can deliver penicillan directly to the site through the port. And, as an aside, may still take the port out in the end. In the mean time, they will drain the cyst with a needle (and insert antibiotic), in a bedside procedure, local anesthetic, every other day. Until they don't drain anything else out. For as long as it takes. Maybe "a couple of weeks."

Ok, so, that is actually good news. He doesn't need to have another craniotomy to get it out. The recovery from which would be a couple weeks anyway, so this is definately better from that regard. We are hoping that also by relieving the pressure on the motor cortex, he will be able to make some more improvement in mobility. I asked Dr. Black if he still had potential to regain full functioning because some of the therapists had thought maybe not since he was so far out from the original surgery. He reassured me that there was still plenty of time for Dan to heal and recover from this and that his functioning would return. (Do I need to say directly I am a little skeptical? However, Hopeful (very hoepful) even still.)

So the first drainage procedure will be today.

I am going to try to get back to YS for a couple days here soon, but don't know when or how. We would like to have coverage for Dan here so I can be there. Still working out the details.

So, enough for this morning. Will let you know more as we know more.

Love and Shalom, Abi and Dan