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:
Mike’s Overbearing Wife’s
- 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
Danna (the wife)