5.10.2006

Wednesday, May 10, 2006

Freaking comcast didn't fix my online service today so this will be relatively short. I'm hoping to blog in more detail from my lil' cafe tomorrow daytime. Stay tuned. For now I'm bugging Michelle's whole family again ... using their computer. Thanks, Michelle.

Summaries:

Bax - doing much better. Fever's down. Probably a short-lived virus. Played all afternoon with Taylor, Michelle's daughter who turns 13 tomorrow. Bax told her "I luh you," but don't tell Michelle - she'll be so jealous.

Mike - not a good day. Sodium way low (127) . We still are wrestling with balancing his electrolytes. He was vomiting and fatigued. So fatigued he didn't know he was vomiting.

Family meeting - very very good. We had both Andrews and Evans along with my dad and 10 of our amazing friends around a conference table for a full hour discussion. We talked big picture stuff - where we've been and where we're headed. They were great listeners, showed empathy, and reported a willingness to consult with these other neurosurgeons we're contacting. They welcomed that, in fact. And Josh sure did a great job, cause 2 of the people he found were people who both Evans and Andrews thought would be outstanding: Laws at UVA and Sen up in NYC. Evans reinterated the fact that we should never feel "stuck" at Jefferson and I shouldn't worry about the logistics of getting Mike somewhere else. If it came to that and if some other surgeon felt that they could make Mike better, folks at Jefferson would take care of moving Mike.

Upshot: Our current course of action: Complete dose of radiation therapy (which is called fractionated stereotactic radiotherapy - much better than gamma knife) over next 4 weeks. Assuming Mike stays the same or improves, we'll wait to drain the cysts (on top and on side)until after radiation is completed. If Mike shows a decline in functioning as a result of growth of these cysts - particularly the one on the side which has grown significantly over the past 10 days (as shown on today's MRI)- then we'll consider interrupting radiation to do a procedure to drain the cysts. At that point we will probably look at a rehab program like Magee. We won't be in a position to really assess Mike's level of functioning until probably Nov-Dec. Any decision to do an aggressive or radical surgery before then might be premature.

Evans reviewed why surgery was problematic due to scar tissue. He also reminded me of something that is very true. Before the craniotomy, Mike and I told Evans that if things were really tricky in there or if taking out the tumor meant causing harm, then he should back out. So, after 5 hours of a good ol' college try, he backed out because he "didn't want to do him in." Evans also said that any other surgeons who look at Mike's case should chat with him about what he encountered in there, because it is true that the scans and the reality are a bit different due to the scarring.

Peter rightly made the following observations. I'm lazy, so am pasting Peter's words here:

1. You have an excellent pair of doctors attending to Mike. Andrews in particular identified the main point in Mike's further care: a doctor must have the wisdom to know how far is too far to go to try to get the solid mass out. The attempted cure should not make him worse than the disease will. At the same time, they have a plan. The radiation plan. It's worked before on other patients. Maybe it'll work again. If it doesn't, then a high-risk surgery might be worth it. But making that decision is a ways off (at least for them).

2. At the same time, there is little to lose in getting other consults.

3. You are very wise in your expectations for what a good outcome might be. Enough autonomy that Mike can enjoy life.

4. The cardiologist's "poor prognosis" statement some weeks back sounded more dire than warranted, with or without his heavy accent. It sounded like his was predicting Mike's imminent death after a short time. Perhaps you should correct the record for everyone. Andrews and Evans were saying nothing of the kind, even as I tried to read between the lines.

Peter's right. I think Mandel's "prognosis is not good" statement was misleading. Mike's not about to die. That's not the situation we're looking at here. I don't even think Evans and Andrews are suggesting that Mike is going to necessarily get worse. In fact, Andrews said he sees a 50/50 chance of Mike regaining autonomy. That's better than what I had imagined. But remember, autonomy doesn't mean working and driving. Autonomy means living a life outside a facility, hopefully at home, with a routine that allows him to take care of his own basic needs, and gives him the opportunity to enjoy his family and the sunshine in our beautiful backyard.

One thing I forgot to write last night. Yesterday I had Mike's laptop at the hospital and I asked Mike if he'd want to type something to our friends. He couldn't see the screen at ALL. But I put his hands at homebase on the keyboard, and he just ... typed! Here's what he wrote:

"I'm typing on the keyboard like a big kid! Yay! I'm recovering nicely here at home." When I told him he wasn't at home, but rather at the hospital, he said, "Ah. Right." Then proceeded to delete "here at home" and asked where the cursor was and then typed "here at the hospital."

It was fantastic to see. Mike may have a lot of issues, but as Victoria (my sister in law) keeps reminding me, it's important to focus on the things Mike can do. And this little typing exercise brought tears to my eyes.

6 comments:

Anonymous said...

Danna,
Brought tears to my eyes as well..with a feeling of "I just got an email from Mike Young -- woo hoo!!" Going to come over for a visit soon, I guess with something salty.
love,
bets

Anonymous said...

Sorry I missed you tonight sister! I had to get major junk food for the big sleepover Friday night. I'm so, so happy that the sit-down finally happened. All sounds good. I hope you were happy with it.? Didn't get the chance to tell you that when I got Bax up from his nap, he wasn't to happy see me at first. A few tears, nothing major. He got happy once he discovered the stars on the wall and insisted on pointing them out for me. He had a great snack. What an eater!! Love him!!! Even though he told Taylor he luhed her. WHATEVER! We're here for you whenever for whatever. Big hugs and kisses to Mike. Love you. Michelle

Dritsas said...

Well, I'll be. He typed? That's great! The last time I saw him (which was not that long ago) he simply was not able to do it—hands too shaky. Hopefully this is progress of more good things to come.

Sorry the cable situation wasn't easy. I did all I could, I swear! Stupid Comcast.

Dr. Itsas

Don said...

That's AWESOME with the typing. Glad you were surrounded by friends yesterday.

Interesting, I never took the "prognosis doesn't look good" as meaning it was fatal. I saw it more as a quality of life issue. Regardless, I am glad it's not as dour as that.

BTW - Danna, does Mike have the Strongbad DVD? That might perk up his spirits. Especially TEEN GIRL SQUAD.

The Brain said...

Dondon - great idea with strongbad. He doesn't have one and there's no wifi at the hospital, so a dvd would be great ! I don't know if he could see it, but he could hear it and would probably really like it.
x0
d

Don said...

Dan-Dan,

You can also get a bunch of them on iTunes now. For free.

Maybe when you have his 'puter at home you can download them.

PS All the TEEN GIRL SQUADS are there.

-The Ugly One