Date sent: 11/11/99 04:21 PM
Dan looks great!

After spending 4 frantic days away from Dan, I am back in Boston, and he looks great! He is awake more of the day (although sleeping now...), he is talking for longer periods of time, talking on the phone, having visitors.

Last night when the resident came to drain the cyst, he was not able to draw anything out. We had a long discussion about the cyst fluid thickening over time. I said that the first draw that I had witnessed had been thick, but easy to draw. He said that the draw he had done last Saturday, when they got over 33 mls had taken little effort, but that on Monday, it was a little more viscuous. Wednesday, it was impossible to draw (Dan suggested that they still inject the vancomicin and that would say whether the fluid was thick or the line was clogged. They were able to inject the vanco and even draw a little afterwards... but didn't really pursue that ... Later, we wondered if they shouldn't/couldn't have tried to drain again after the vanco went in. Dan didn't like the idea of going a day without draining).

At the same time, the draining on Saturday had reduced the size of the cyst, but that the CT from Tuesday was unchanged from then. So, is the cyst refilling that quickly, or does only taking smaller amounts of fluid not really change the image? I think that the goal is for the cyst to be completely drained/collapsed so that it can begin to be reabsorbed.

We are waiting for Dr. Black to get back to town. We have these questions, plus a few more. As usual the residents make a guess at what the plan is or what to expect. But, as the guy the other day said, "there is no textbook answer in this case... we sit around a table with Dr. Black and try to decide what to do next.... ". So, we wait to talk with the main guy.

Although we don't like to speculate anymore, Dan did say that the last time he actually talked with Dr. Black he said a couple of things: 1.) That they would keep Dan at least until the weekend, and probably through the early part of the week next week. (So, theoretically, we might come home next week.) 2.) That ulitmately they will take the shunt out, which will not be a bedside procedure, it will be in the operating room, with local anesthetic, not general... and that it will be in a couple of months. (I guess we will be coming back to Boston in the near future.) 3.) Dan asked if he had "made the wrong decision" (regarding whether to aspirate the cyst or have the full craniotomy in the beginning of all this ...) Dr. Black answered unequivically, "No, you didn't." That gave Dan some relief, I think.

About his mobility: He is walking more, better, farther. Yesterday he asked the PT if he could try walking without the AFO (the brace they made for his foot), because in the night he thought he felt some articulation in his ankle, and didn't want the brace to interfere with that. Although he was not able to make intentional movement in his ankle when the PT asked him to, he was able to walk well without the brace. His ankle did stabilze as he walked. His foot drops (ie no dorsiflexion yet) but he is able to walk well, and more comfortably without the brace. He is using his knee more in the step through as well. Today, he was able to walk, without the brace, but with the cane and no other assistance. I walked next to him and said "Hey, I don't have to even do anything here..." He said "You are giving me moral support!" I thought that was great. He does feel like his leg is getting stronger.

His arm is harder to tell about improvement. Yesterday, he had the OT take the tape off and his skin was really red so she left the tape off. (He is having his shoulder taped because the muscles in his left arm and shoulder that normally keep the arm in the socket are so weak that they aren't able to keep his arm in the socket. Looking at it straight on, there is about a 1 inch gap between the shoulder socket and the top of his arm... this is called subluxcating.) Anyway, the OT (remember OT's care about arms PTs care about legs) took the tape off and had him exercise to help strengthen. She will be back today to retape. Arm exercises are usually done laying down to help mitigate the effects of gravity. Also, when he needs to work a specific muscle group, he can isolate that group better laying down than sitting up. However, the OT here and the one at MVH both seem to think he shows good signs for regaining strength, ie, that his sensation is in tact and that his proprioception is in tact.

We are also finding that he is missing the children more and more. He sends them email at the Antioch School, and they write back. He loves this. And still, he thinks of them and speaks of them often. We have talked about things he would like to do with them when he gets home. We talked about the Thanksgiving Feast at the Antioch School, and he would really love to be able to attend that. I think it is a good sign in his healing process that he can attend to thoughts about going home, seeing the kids, having some of our life back, as opposed to all of his thoughts being about treatment plans and outcomes.

Boston is starting to get chilly. And the sun sets really early, it's 4:15 and already dusk. And, the journey continues.

With Love and Appreciation, Abi and Dan