Saturday, June 3, 2006

Usually I use the blog as a place to think about things. That way I can focus on Bax in the afternoon/evening while I'm at home - knowing I'll be blogging later so no need to think about it now. Well, I've been thinking about the whole Magee, Mike being home, Mike needing care thing all day - so the blog is almost seeming like work tonight - not necessarily an outlet.

I paged Andrews and talked to him briefly today. Wanted to be certain that he knew they were planning on starting Mike at Magee right after radiation ends (probably Wed). He knew. I also told him about Magee's need for me to assure them that we have a plan for Mike to be cared for at home. Andrews didn't know about this requirement. He told me I should talk to my case manager to discuss options. Andrews also said the current plan is to start Magee, then in 2 weeks, have an office visit with Andrews or Evans to review new MRIs and see if he looks ready for another surgical procedure (to do the drain). Then he'll go back to Jeff for the surgery and after recovering from that, he'll return to Magee for more rehab.

Mike has a new kind of urinary catheter on - it's a Texas catheter that works like a condom with a tube at the bottom that drains into a bag. It's less invasive than a foley which Mike had for like 2 months. The foley is designed to constantly drain the bladder. It never gets full because it's always emptying. Because mike had it in for so long, it is challenging now for him to go of his own will. Plus, it feels weird to just go to the bathroom while he's in bed or in a chair. I think this is the intermediate step to see if he has knowledge of his own need to go. So far, we're not sure if he is aware when he's going or not. Once we get this figured out, we can work on life without a catheter - which would be fantastic.

Brought Bax in to see Mike. Longer visit today - about an hour and a half. Mike in the rolling chair out in the hallway. Bax running around and making friends. Mike seemed a little down, though. I asked how he was and he said, "good," but he seemed sad. Maybe it was just an off day.

There was a great moment today. Bax was doing something he shouldn't have been, and his shoe fell off and he couldn't get it back on, so started whining a little over by the window. I told him to come over to me and I'd help him with the shoe, but he kept just whining. I told him again to come over. Mike turned his head in Bax's direction and said, "Come on, Bax. Go see Mama." So, even if he didn't seem it - he was present.

That's all for now. CSM (crazy susan/viv pickle/ susan murphy) came over with a DVD to watch and yummy indian food.
love, danna


Anonymous said...

Have you looked at the brain injury program at Moss Rehab? They are equal to Magee in the quality of care they provide, but I think they tend to be less stringent in their admission criteria. The disposition plan (the plan for discharge from rehab) doesn't need to be set in stone quite as much as it does for Magee. (or at least it used to be that way). It might be worth looking at. They are in Elkins Park. Also an excellent brain injury rehab. Maybe you could ask the case manager to contact the Moss liason to come evaluate Mike for their program. It may be worth a shot.

The Brain said...

Thanks, Ellen. I'll talk to the case manager about it.

I'm not sure if Magee needs something as definitively as they would lead you to believe. It's almost like they want to be certain that we have a support network in place to help accomodate Mike's needs upon discharge - otherwise, why bother with rehabilitation cause without a support plan in place, Mike would need to go to a facility or something.

Again - not likely - especially since I think we will see much improvement in Mike's condition as time goes on and after the surgery.

What I really need to learn more about are in-home nursing and care-provider options. Any suggestions on who I should talk to about that, ellen?


francine said...

Hey Danna,
I almost think whether Magee required that you make these decisions now or later isn't really as much an issue...at some point, you'd have to figure them out anyway. It must be scary to think of him moving from a hospital where he's safe and monitored to back home, even though of course it's wonderful that this is now a possibility.

But maybe it would help to say, well, let me just have a plan for just the next year and then we'll re-evaluate? I think the next year has so many unknowns...It's hard to say how self-sufficient he'll be when he's ready to come home. Maybe not much, maybe a lot. My guess is that Mike will have ups and downs but ultimately will be a much more independent and healthy person in another 12 months than he'll be in 3 months or 6 months. I think of his rehab (in or out of Magee) lasting at LEAST a year as he learns to live real life again.

No matter what, this first year home will be a big adjustment for the three of you. If it's financially possible to have an in-home nurse at least for this year, that sounds like it'd be ideal. Even if mike seems great in August, you might be afraid to leave him alone when you go to work. And maybe in 6 months you'll both see that he's fine alone for periods of time and can cut back on the nurse's time with him.

I know these things are expensive, though. Maybe instead of asking family to come help in person, some family could help out with nursing costs?

I know there are so many things to consider and it's a complicated issue, but I just wanted to suggest that it may help to break it down into a smaller, more manageable chunk of time. Take this first year for trial and error as you learn to make a good life together again.


Anonymous said...

Off hand I don't know about the in-home care provider options but I will try to find out what I can. I would think the Social Worker could help you in this area. Are you talking about a companion to help with toileting, grooming, and safety kinds of things? Or someone to provide more nursing care needs? I'm assuming it's the former but wanted to make sure I fully understood.