Friday, April 28, 2006

Thank you for all the kick ass advice regarding the nursing situation (It's taken care of now and Mike's nurse for tonight is the best nurse he's had thus far).

Important: Mike's in a *new* new room. 6604b at JHN (9th and Walnut). The other room was too removed from the other 6 step-down rooms. It was designed for patients with infections etc who need to be separated from the others. It was the only thing available when Mike was transferred there on Wed. New room is great!! Shared with a roommate, but I would actually prefer that - more traffic coming in and out means more people seeing if Mike is ok. Sunny: nice huge windows facing east and big fat windowsill to place things on. Right next to nursing station.

Got to JHN (to his old room 6613) at 11 am to find a dreadful sight: mike practically naked, with compression boots pulled off, EKG wires pulled off, with an accident in the bed. I was livid. I immediately got the nurse (not Vince today) who was very responsive and felt terrible that Mike was in this state. She had been in just 15 minutes prior to get him cleaned up, but in that 15 minutes, he had proceeded to sabotage himself by getting antsy and pulling at things. That room was NOT the right place for him. Too far from everything given his condition and impulsiveness.

Saw Dr. Andrews who showed me Mike's MRI from last night. S.F.T. is growing like a freaking beast. The cystic parts (on the top, pressing into the fornix and on the side pressing into the hypothalamus) are much bigger than a month ago. The cyst on the top is like a big mushroom top, pressing right into Mike's short-term memory processor - and it's easily 2X what it was a month ago. Current plan is for Andrews and Evans to do a drain of the cyst with a needle on Tuesday. Hopefully this plus radiation will give Mike relief.

In the meantime, Mike's still feverish, and of course the Infectious Diseases docs have to run a bazillion tests to see what's brewing (if anything) but I'm convinced they're going to find no infections. I firmly believe the tumor itself is directly responsible for pressure on the hypothalamus resulting in fevers.

Told Dr. Andrews about shitty shitty Vince. Andrews said we'll just make sure he doesn't get assigned to Mike again. Also got in touch with nursing supervisor about Vince. He appreciated the detailed information and apologized for Vince's behavior. Evaluations are coming up, so the info was very much appreciated. Mentioned displeasure with Vince to several nurses (including Andrews and Evans' main nurses, Kelly and Lauren) and it seems it didn't come as any surprise.

Kelly and Lauren also told me I can ask that certain nurses not take care of Mike and I can also demand that he be turned in his bed throughout the day to avoid skin breakdown and request that he take ALL meals sitting up in a chair. I've started requesting that he eat meals sitting in a chair and encourage you to do the same if you're with him at mealtime (granted he's not running a 104 temp or something). It's a freaking ordeal to get him into a chair (with the 1,256 wires and tubes he's got), so if he's pooped it's understandable that the nurses won't push for him to get up. However, as his advocates we can certainly ask that that be a priority.

Today Mike was alert and funny and had more of an appetite. Sodium is finally under control back in normal range. Short-term memory doesn't exist, though. He was up in the chair for 2.5 hours. Started getting sleepy and very confused around 3:30 pm. Kept thinking he saw people in the room: Scott Greer and Meh. Favorite nurse practitioner Judy took out Mike's soutures today. He heals up so fast it's amazing.

I got so tired of seeing docs, therapists, and nurses ask questions of Mike to which he would provide inaccurate answers that I posted the following sign above his bed:

Dear Nurses,

Mike’s Overbearing Wife’s
Cheat Sheet

  • Mike’s 38 years old with a 16 month old son, Baxter.
  • Diagnosed with Brain Tumor just 6 months ago.
  • Has had 9 surgeries in past 6 months.
  • Mike has little if any short-term memory.
  • He is not a reliable person to ask about his own condition – at all.
  • He is not an accurate source of information regarding whether or not he has:
    • Eaten or drank
    • Taken his meds
    • Had a BM
    • Had headaches
    • Seen the doctor today
    • Been up out of bed today
    • Or even if he’s been bathed.
  • [He will answer these questions confidently and the response is most often WRONG.]
    • His ability to self-report pain, body temp etc is also questionable. With a 104 fever, he says he’s just peachy.
    • Not able to feed himself. Mid-meal forgets he’s eating
Thank you for taking good care of him. He’s my best friend and this has all happened very quickly.

Danna (the wife)


Anne Ladenson said...

Hurray - Vince is banned and he's going to get a crappy performance review - woo hoo!

karenle893 said...

But I still might find him to kick his ass, 'cause it'll make me feel good.

csm said...

i'm with getzie. why waste a good PMS episode?? we can look for him out back in the alley after his shift... time? place???

Kel said...

Saw Mikey today from around 4:30 -6. He was fairly alert. Kevin and Beth were there when I arrived.

We talked about a lot of things. I'd say he was about 50% lucid and 50% random. He remembered stuff that I told him a while back few days to a week but added a twist of bizarre to it. For example he asked me about my recent comedy Sportz workshops at Friends Central and then said “they are the ones with the huge water bottle right?"

I know that everyone has been correcting him and maybe that is the best course of action but my gut felt like he was thinking of a different word and it just came out "water bottle" so I said "yeah, that's the place" He seemed so much more relaxed and less agitated after that. Our conversations went in and out of the lucid. I told him I am a little concerned about this upcoming bike ride never having done it before he took my hand and held it a long time to reassure me I’d be OK. He seemed very tired and toward the end of my visit he was speaking gibberish. After one short gibberish phrase I asked him if that was a good thing or a bad thing. He replied “I don’t know, difficult to say really"

He was just drifting off to sleep when I was leaving. I noticed he was talking in his sleep. Mostly gibberish again, but one very emphatic "I'm PSYCHED!" More aggressive really than buoyant but very clear. I whispered I was leaving and he whispered back “ok see you later”

Danna I left a box of chocolate "Aspirin" for you and Mike in the small bin of toys on the window ledge. Feel free to keep them all to yourself or share as you please. :-)

I was at once pleased to be able to hang out with Mikey and see him more alert but truly I am heartbroken. I just feel so sad. At least he LOOKS great with that sassy buzz cut.

Peter said...

I checked in at about 8 PM Friday night. He was watching the Godfather on AMC. Or listening is probably more like it. Boy, the new room is nice, compared with the dungeon of the last few days. He shares it with another patient.

We talked about The Godfather and who was in it. He can pull names out of his memory in his current state better than I can. I was describing the scene on the TV and couldn't remember who Michael Corleone was played by. "Al Pacino," he said, without a hesitation. I told him how much better he was than I at that. "Yes, I really do have a talent with that," said Mr. Modesty.

I had about the same experience as Kel. Much lucidity mixed in with some gibberish. But I must say he was more lucid and animated than he's been in 3 days, in my opinion.

I took the opportunity to ask him some questions. Did he have a sense that he was more interactive today than in the past few? "Definitely," he said. "I can really interact with people today."

Dashing my hopes of following up on that line of thought, he proceeded to explain that the Chocolate Syndicate and the Vanilla Syndicate were suing one another. (I'm a lawyer, and I had earlier noted that he finished a cup of ice cream that sat before him. Some of his occasional gibberish I think is just an amalgam of references and associations, at least when it's truly random.)

I asked about today's visitors, and he said that Scott McCormick and Larry Gross had been there visiting that day. "Is Scott from Discmakers," I asked? "Yes," he said. (I have no idea if any of that is accurate -- those visitors or Scott's employer.) "I need to talk to Scott some more," Mike said.

Changing the subject, I told him that I was amazed at how calm and even-tempered he was being throughout this process, and that if it were me, I might not be so calm. "I focus on the symptoms," he said, "instead of the problem." I responded that I thought that was a good strategy. He agreed. He went on, and was fairly animated. "It might be that the ship needs to turn around and there's a narrow window and we had a chance but we couldn't get the ship turned around in time," he said (or something close to that). I told him I understood perfectly, and that I thought his outlook was very healthy.

You know, there's a "Being There" danger here of reading things that aren't there, and I'm trying to interpret him as objectively as possible without projection. But I must say that his "narrow window" and "getting the ship turned around" metaphors, at least to me, couldn't be clearer.

I told him about the cyst aspirations scheduled for Tuesday, an that from what I had read they were relatively simple procedures. He thought that was fine, he said.

Do you have any sense of time, I asked. "Not really." Is that frustrating to you? "Sometimes."

Propped up in bed, he kept listing to his right, and then correcting himself every so often. He opted for Dasani water -- no straw, straight from the bottle -- over his Sponge Bob cup. I told him I would leave him to The Godfather, and that I might see him tomorrow. "I'd like that," he said. We shook hands.

Anonymous said...

Way to go Danna!!! I wish I had had Vince alone while I was reading the blog. It would have been just too bad for him--I would have put my Evans/McDougall personality together and then he would have been in trouble! Let's hope that no one else has to put up with the kind of care that Mike got from him. What an advocate you are!! I know that Mike is truly thankful for that. BTW, my hubby had a cornea transplant at Wills Eye about 13 months ago. I'm very familiar with the area of Philly where you and Mike spend most of your time these days. Of course, that is the only area of Philly that I am able to traverse comfortably. Newark, Delaware, is more my speed! Since I had not met Mike before this situation arose, I don't think it is probably a good thing for me to visit him. Just might be more confusing but know that I'm thinking and praying for you guys. Also, I'll give a little wave on the days when we visit Wills Eye--9th & Walnut--for Jim's follow-up appointments. Hang in there, Danna, Mike and the whole freaking support team!!! Please give Baxman a hug and kiss from me. I realize he doesn't know me now, but just wait until you get to Delaware. I can't wait to see him, talk with him, and just play Grammy. It's one of my favorite jobs and I've had a bit of practice with 3 grandchildren of my own. Ask Leigh Holbert about Miss Carolyn. Carolyn Clark, UD land

Anne Ladenson said...

good morning danna - this blog is the first thing I check in the morning and the last thing at night. I hope no new posts from you means you're enjoying some time with bax, your sis and your family in from NH. seems like a lot of people will be visiting mike this weekend. i'll post after I see him tonight. Big hugs, Anne

Heather said...

Mike had a lot of visitors yesterday because I just missed the early and late crews squeezing in from 6-7:30. He slept for the first 45 mintues I was in the room and I thought it was because I was boring him by reading about Opus Dei in "Time" but I am happy to hear that he had just had visitors so he was likely pooped. I also read a bit about "Snakes on a Plane" with quotes from Samuel Jackson (right?) that included "motherf------" written a few times just like that, but I said the whole word since I thought it was confusing the other way and I like the f word anyway and the nurse poked her head around to see who was this nasty woman uttering profanities to a sleeping man. We talked about recipes and Julia Child and he said he'd made two recipes of hers in the past and said he's always wanted to make snails, and that Danna would definitely eat snails, and since she lived in France, I figure he was probably right.

karenle893 said...

Hey, I think the whole hospital is in awe of DANNA and her power posse. When I walked in at 12, the attending nurse looked up and listed EVERYTHING Mike had done so far that day without me even asking. Which included a normal temperature (yipee) and chills (sucko)
I said "hey" as I walked in ,and Mike said, "hey , getzie," We had a good visit, he seemed very coherent and only went into "poetry" once when I was there alone with him. Even then, it was more "metaphoric" speak. A plan to get better, which I can't quote, but which involved breakfast and doctors. He mistook Drits for Mario when Drits came in, but Drits was far from him and I am apt to think thatit was wishful thinking. Drits talked about upcoming CSZ stuff, which Mike was very interested in. He definitely was NOT nodding off.

Apparentley, Nurse Vince was hiding.

Anonymous said...

Mike is a lucky lucky man to have such a wonderful wife/friend/advocate. That nurse problem needed to be taken care of quickly and you did a fantastic job!
You're friends at UD are thinking of you all and watching the blog closely!

Scott C