Friday, April 21, 2006 - morning

Very late last night, I talked to one of the residents who has been following Mike's case. It was 11 pm and Dr. Evans was going to be in the O.R. for another 2 hours. What a life. Yes, ours is complicated right now, but 16 hour days - 7 days/week? I'm not sure that's any better.

The resident explained that they are still approaching Mike's situation in as an acute issue right now. Rather than thinking ahead, they have to deal with immediate issues, which may be why I haven't gotten a real sense of where we're heading. What are the acute issues? High fevers, fluid collection in the right frontal lobe (which they sampled last night directly through the shunt - no spinal tap), possible infection, monitoring the cystic component that is responsible for the hydrocephalus since it's blocking the 3rd ventricle (which I mistakenly thought was a new thing. It's not. They've known.) So the fact that there's little we seem to know about what life has in store is for a reason.

I'm still trying to schedule a sit down with doctors.

If there are questions you would like answered regarding Mike's situation, feel free to post them or email me. When we sit down with the docs, I'll consolodate and see what answers I can get. Some big ones we already have answered, just so we're all on the same page:

Mike's vision is not expected to be restored. Double vision may be corrected with lenses, but the reduced fields are a permanent deficit.

Mike's endocrine issues are permanent. He'll never make cortisol, thyroid, testosterone, growth hormone, or the hormone to regulate electrolyte balance on his own. Meds are forever, baby.

The tumor is considered inoperable except for the possibility of a radical, risky surgery in the future if his life is immediately threatened or his quality of life is particularly dismal.

Radiation is not expected to shrink the tumor, just stop it from growing, though it may shrink the cystic components since they are fluid-filled and not solid.

What we don't know: if mike's neurological deficits are permanent. That's the big one. The really big one.


francine said...

Hey Danna:

If or when you're ready, I would suggest finding a support group for families dealing with similar illnesses. I think doctors can tell you all about the mechanics involved and give their best guess at a prognosis, but I bet people who are actually living with it can also give really valuable information about how to deal with everyday issues and emotions. I think sometimes the unknown is overwhelming so their feedback might make things slightly less scary. Just a thought. Thanks again for keeping us updated. I think about you guys every day and am hoping for the best.

Anonymous said...

YES, good idea, Francine!

I just looked up support group for this tumor and found a GREAT site:

It lists treatment options....200 patients belong: 50% are kids, The rest are adults of which 30% were diagnosed as adults.

Give it a try. Hang in there, Danna girl!