Thursday, May 11, 2006

Mike’s having a good day. Not a great day, but a good one. I was there from about 1 until 4 pm. I washed his hair and face and gave him a nice shave. He ate half of his lunch. His sodium is still too low: 130. They’re working on getting that closer to 140. The low sodium might be responsible for his extreme fatigue. In spite of it, he was sweet and smooshy and pretty content. Always knows who I am. We listened to Rufus Wainwright and he tapped his fingers to the music.

I told him it was Nurse Appreciation Week while nurse Nicole was there in the room. He looked up at her face and said with a nod, "Well Ok then. I appreciate you." We laughed.

I think today I figured out some of Mike’s vision issues. It seems that not only does he have no peripheral vision, but he also has no vision down low either. Anything below the plane of his nose disappears. Put it this way - I put my face right in front of his, just 2 feet away and told him to tell me when he could see my fingers wiggling. I then brought my hand (with fingers wiggling) up from my lap in front of my face. He couldn’t see them until they were in front of my own eyes – basically right in front of him.

I think this black hole that exists down in his lap contributes to his confusion with what’s going around him. He often tries to place things down around his knees when he’s sitting in a chair, as though he things there are compartments or drawers or something down there. He also refers to objects that he thinks are there that are not (books, cats, etc), often reaching down low for random things. I talked to him today about how it might be helpful to “look” with his head and neck instead of just his eyes. He started doing it and it seemed to help a bit.

I also told his nurse Nicole about my observation regarding Mike’s visual fields. It proved useful for her when giving him pills to take. Usually she’d go to put a pill in his hand (down in his lap) and say, “Here Mike. Here’s a pill for you to take.” And he would reach randomly out move his arm all over, unable to find her hand. Instead, today, she said, “Mike, put out your hand. Lift it up.” And she put the pill into his hand when it was right in front of his face. It was much better. No guessing, no reaching, no random movements like before. As much as Mike has to learn new ways to do things, we need to learn how to best help him accomplish these tasks.

On a different note, Susan Murphy got the Comcast guys to call me right away. In the meantime I had a brainstorm while in the shower (as I am wont to do) and figured out one thing I had yet to try to get the high-speed internet working. So I tried this one random thing and Ta-Da! Internet! It was still a bit slow but I got it working. But then, thanks to Susan, the Comcast folks got right out here and did work on the outside pole and gosh darnit – I think my service is quicker than before. Susan is also fantastic because she brought the nurses a ton of yummy cookies from south Philly today and got Viv Pickle gift certificates for Judy (our fabulous n.p.) and Kelly and Lauren who work directly with Andrews and Evans.

Oh yeah - Bax has an ear infection. Now is on antibiotics – but he’s still a happy guy, eating well, and lots of giggles.
Love him.

Our new thing: I point at myself and say a really exaggerated, “I!” then “LOVE” and then point to him and say “YOU!” And he does it back with the hand gestures and everything and then I say, “No! I love YOU!” And then he does it back… you get it? Or should I go on some more? Ok. So then, I say, “I love YOU!” and he says… oh… you do get it. I’ll stop then.


Cheryl said...

So could the vision thing be a combination of vision and memory - he doesn't "remember" that he has a prob w/that part of the field???

Anonymous said...

Hey Danna,

Mike was great tonight. He was asleep when we got there at 5:30, but his food was there so we woke him up. He ate well, was very alert tonight and quite talkative. Very Mike too. He had us laughing several times.

Some highlights:
He knew both Angela and I the mintue we walked in and called us both by name. We asked him some tough questions like what my dog's name was. First guess was Mazzy, nope, then Rosie I said close, then he said Reese. Correct! Then I was talking to him about E3 and asked him if he knew what that was and he said sure, the Electronic Entertainment Expo. I nearly fell out of my chair (that's the right answer by the way). We talked about the PS3 and how it was going to cost $599. He literally lit up opened both eyes wide and said comically Wha, Wha, What!??? That's crazy. We all laughed. We even talked about Micah and he said yeah he's the guy that runs Oasis. Then told him that Scott's having another kid and asked if he knew his first kid's name and he quickly rattled off Soen.

The nurse came in (the one with glasses and yes Scott she's hot) and said I need to check his flowy (sp). After she left Mike appeared to wink at me, definitely smirked and said, yeah she likes to touch my flowy. We just burst out laughing.

He ate really well too (at least to us) polishing off mashed potatoes, roast beef, nearly his whole roll, his ice tea and some salad and some soup. He even finished his entire ice cream. We had to help him eat a little but he really had great control nearly all on his own. Funny side note I asked him to rate the soup on a scale of 1 to 5, he said 3 and that is was a little bland. I said nah, it's better than that. So he said try it. It was bland I said and he replied, told you, I wasn't lying. And gave me a smirk. LOL.

He was getting sleepy and dozing off at the end so we left him around 7 to get some rest. I think he was tired of all the questions. Sorry for the long post, but just wanted to share the good news with you.

Mary Fritsch said...

Danna, you already probably thought of this. Maybe you should post your discovery of how to place objects, food, pills and the like on Mike's wall for the nurses and everyone to know about including Mike. Maybe if he sees it often enough, he might remember from time to time. Quality of life baby and you just gave him another way to live it!

Also have a question on the sodium for the docs and you. Is he intaking alot of saline or other fluids which might be flushing his sodium out of his body which would have some affect on this number. If so, are they ways they can adjust? I am sure they are trying to do this. Are there other power drinks that contain electrolytes that he is drinking other than just Boost? That stuff tastes like tar if not mixed with ice cream.

Love ya all.

Mary Fritsch

The Brain said...

Cheryl - i think you're totally right. When I describe it to mike like that he agrees. x0x0

Kirk - I loved your entry last night!! It sounds like you had a fantastic visit. thank you for sharing all the fun details. You made my morning.x0x0

Mary - I'll ask the nurse and docs tonight about the fluids/sidum issue. He has a specialist (Dr. fillipone) on the case and he is supposed to be t.h.e. best. We'll see x0x0

francine said...

wow. Mike's visit with "anonymous" (Kirk?) sounds like it was amazingly great!!! It sounds like the real Mike is making an appearance more and more. The good days are taking over! I don't want to jinx anything, but I think the boy is on the road to recovery. :)