6.13.2006

Tuesday, June 13, 2006

[Stephen Colbert: a random reminder of the old Mike]

Today was rough. Mike’s a little lethargic, slow to process information, and not recalling information well. Happy though, and not totally out of it like last week.
I chatted with the nurses about it and they agreed that Mike wasn’t looking great today. They, too, noticed that he was having difficulty even paying attention to information at the moment it was communicated. He couldn’t even follow simple instructions (e.g., reach more to the left to locate your water bottle). I immediately recognized the change and wondered if they had started the tapering of his decadron. Yup. This morning, instead of 8 mg, he only got 6. The nurses said I could page Dr, Rommel if I were concerned. I did and he was there within 5 minutes. He said that the taper is necessary because it’s not good for the immune system, the adrenal glands in particular, to be on these steroids for too long. However, if the therapists working with him see that he is really on a downslide over the next day or so, Dr. Rommel will place a call to Dr. Andrews asking about the possibility of upping the dose again.

I got a call from Bax’s daycare at 3 pm. The little bugger had a 101.5 fever and they suggested I take him to the doc. Well, fortunately, they got him in at 6:15 pm. And nope, it’s not just teething. But it’s also not an ear infection. The verdict? It’s a version of the coxsackie virus. Complete with sores in the mouth, on the back of the throat, a rash, diarrhea, fever, aches, and general anger at the world. Well, that will explain what happened to my boy over the last 5 days. And thank gosh it’s not teething – cause that would mean this hell would last another month at least. Instead this acute hell will probably be over in the next 2 days.

I got the call about Bax’s fever while chatting with the social workers. They were wonderful. I’m glad I was there at that moment because it was just too much. I can’t handle everything. I just can’t. Lately I’m parent my sesame street and motrin more than anything. I hate it, but that’s all I’ve got. I crashed when I learned he had a fever. I operate on adrenaline 80% of the time. I’m still sort of in trauma mode, because as far as I’m concerned, we really have no freaking idea where we’ll be 1, 4, 52 weeks from now.

Couple random thoughts from the last couple of days:

Mike appears to have a nice window of vision up high and above right. Think 2 o’clockish. It’s from his left eye, which does have a functioning sight line across his body towards the right. The right eye doesn’t appear to have much vision at all.

I took him up on the roof deck today. It was beautiful! They have tons of flowers and plants, and a greenhouse full of orchids. He sat, eyes closed, in the sunshine. I moved the wheelchair so that Liberty one and two (skyscrapers) would appear in that one working window of sight. I asked what he saw and he said, “Ritz two.” I said, do you mean “liberty two?” and he said yes.

********

Today after Bax’s Dr’s appt, I took him to the drug store to fill a Rx and buy pedialyte. The cashier is a sweet young woman who we see a lot at Walgreens. Mike, Bax and I used to walk there together regularly in the fall and winter. She chatted with Bax and remarked at how talkative he is these days. It was a nice moment because Bax was distracted and happy and I was reveling in the smarty pants that is Mr. Baxter. And then we said “bye-bye” and she said to Bax, “Are you going home to see Da-da?” And he just looked at her. Then she asked again. I didn’t know what to say. No reason to correct her. No reason to explain anything.

Bax just looked at her, stunned and then looked at me and asked quietly, “Da-da?”

I felt like I had been punched in the gut.

I had another moment today – watching the Colbert Report. Tomtom and Meh pointed out a few months ago that when Stephen Colbert runs across the stage to interview the guest, he has this Mike-ish bounce in his jog with his hands in the air. It’s true. It’s totally ComedySportz Mike Egg-goo Young running onto the stage for the second half. If he can ever do that again… I’ll…. I don’t know. Do something really really good for the world?

Ok, tomorrow is our romantic Le Bec Fin lunch. I hope he enjoys it.

Finally, a question: Would anyone be willing to do research on affordable and reliable dehumidifiers? I need one for our smelly basement. Preferably one with an automatic shut-off when the reservoir is full.

11 comments:

weissman said...

not sure what you mean by affordable. below are two options: 229 and 192. difference is based on how much capacity you need.

when we first moved in, our basement would regularly flood when it rained a lot. flood like 3 inches of water flood. we got one of these Whirlpool®
70-Pint Dehumidifier ENERGY STAR® Item #: 7670 Model: AD70USS from Lowe's http://www.lowes.com/lowes/lkn?action=productDetail&productId=7670-46-AD70USS&lpage=none. it's 229. you may not need such a big unit, we have a large basement.

if you have a small basement, you could likely get away with Whirlpool® 50-Pint Dehumidifier ENERGY STAR® Item #: 5386 Model: AD50USS.

i can personally vouch for the former model, it's what we have. there is auto shut off, and you can make it run continuously if you have a drain in your basement. you just use the hose hook up and have it dump into the drain, then it runs constantly no problem. if you don't have a drain you just have to empty the bucket; we had to empty ours once a day with the 70 pint thing when it rained. no big deal. it also has an "automatic" setting where it comes on when you reach various moisture levels...we set ours to "dryest" because with 3 inches of water in the basement, you have a lot of work to do. they're pretty energy efficient, you do hear a humming when they're on.

finally, if you want someone who has already done all the legwork on waterproofing companies, and who will be happy to negotiate a contractor into submission, i'm your woman. we ended up getting it done, even with a dehumidifier it wasn't possible to deal with our basement. yours might be much simpler, many people's are.

let me know how i can help. i can even pick one up for your and deliver it this weekend.

CSM said...

Consumer Guide has a comparison that you can sort by score or price.

http://products.consumerguide.com/reviews/browse.epub?sectionId=728

The Brain said...

Awesome, Mike W. Thank you. I am going to take you up on your offer to pick one up for me. I'll send you a check for it. I'm around here and there over the next few days - especially with bax getting sick and all... call my cell: 215-868-7813. If I'm not around, you can always leave it up on the porch. I live in a safe neighborhood with a very good watchdog neighbor/friend.

I have a small basement, so could deal with the smaller one as long as it has the auto shut-off. My basement doesn't accumulate too much rain, it just gets moist. Our old cat peed throughout the basement when we moved in, so the moisture makes the whole house smell like pee. Lover-ly.

Thank you so much. This is something that's been on my to-do list for like 6 months. It's a huge huge help.
love, danna

Anonymous said...

what else do you need danna? can you stay at home with bax today and/or tomorrow? rest up a little?
xoxo,t

Don said...

"when Stephen Colbert runs across the stage to interview the guest, he has this Mike-ish bounce in his jog with his hands in the air. It’s true. It’s totally ComedySportz Mike Egg-Foo Young running onto the stage for the second half"

Absolutely right! I have video footage of Mike doing his own inetrview stylings for The Barrymore Awards from about 4 years ago. Funny stuff.

Jalena said...

HAPPY ANNIVERSARY!!!

Hope you have someone to stay with Bax so the fabulous, romantic lunch can go on as planned.

And look how quickly your friends rushed to help you. See, you feel alone sometimes but they are behind you and there to support you and Mike all the way.

The Brain said...

Mike W - My friend Heide has a dehumidifier she's not using and is lending me for a while, so HOLD OFF on buying the unit! If you've already picked one up, I can certainly return it. Thanks again for all your work looking up various models.

x0
danna

Peter said...

You are Mike's best doctor. You performed the best and most effective visual field test yet.

weissman said...

ok...just let me know when you need me to get you one for real. offer stands.

dehumidifier said...

Hi, your blog is fantastic. I'm searching for a dehumidifier to my new house and you've showed me a lot of types. It's simple great. I've a site too: http://dehumidifiers2you.blogspot.com, I think it's good too. Under this link: dehumidifier you can find some interesting thing, just visit this links. Thanks Lora

dehumidifier said...

Hi, your blog is fantastic. I'm searching for a dehumidifier to my new house and you've showed me a lot of types. It's simple great. I've a site too: http://dehumidifiers2you.blogspot.com, I think it's good too. Under this link: dehumidifier you can find some interesting thing, just visit this links. Thanks Lora