10/4 Tunnell Meeting

He is awake this morning, and lucid.  I stopped at Starbucks on the way and got a big pumpkin spice latte because we had been talking about it yesterday. We chatted and I gave him a shave as we waited for Arlene to arrive.  He is now coughing up huge balls of yellow stuff.

He did not eat my dim sum yesterday because they had put it on the side table and he said he couldn't reach it.  Cognitively there seems to be only one way to do things and not much creative problem solving.  Like there is only one way to scoot up in bed and that is using the headboard.  The dim sum box is far away, but he wouldn't to sit up in bed and reach over to get it.

The meeting I think went well.  Present is Bella, the speech therapist, Michelle,and an occupational therapist, Sydney...and of course Arlene and I.  Arlene has a strong presence.  Id take her into battle any day.  It was our mutual intention to get a state of the union for her and to also see how we could better the situation to put him at optimal stress and workload, and perhaps garner an idea of progressive timeline.  He is in this peculiar situation that since he is a fall risk he cannot get up on his own so he has to sit and wait for others to help him.  This gives him the perfect excuse to sleep all day.  He needs to be kept busy to not allow him to do that and the end decision was to actually write him out a schedule.  He loves a good routine so he knows what to expect.

The sleeping all day without enough movement has garnered him fluid in his lungs...they think it could perhaps be that is rather the result of small amounts of liquids going down his trachea instead of esophagus.  I don't buy it, but Friday we are going to find out as he is scheduled for a Barium contrast swallow study that I get to be present for and film with my phone.  This is right at the top of his block at St Francis Hospital, and they are going to wheel him up there.

Don't you guys cough like your life is about to end when you get just a tiny drop of water going down your trachea?  I think hed know, but...we will see.

This fluid in his lungs has him coughing, making it difficult to sleep, and its draining his energy. 

Sydney with OT wants him in street clothes more to get him out of the mentality of a hospital patient.  I'm going to dig through the drawers to see if I can find something comfortable.  I agree on the psychological aspect of this, and I also set him up for a haircut next week.  That will help as well.

The schedule they wrote out for him has him basically getting up regularly to use the restroom, on a schedule, blocks out his therapy time - really his entire day from 7a to 8p.  He has to eat his meals sitting in a chair, and then stay in the chair for 30minutes after the meal to assist throat clearing.  Doesn't matter what he does, go do laps on the floor, go watch some TV...whatever.

This is all good and positive.  The negative is....that there is a growing feeling that plan B - long term care could be a practical reality, and not preparing for that now could be a mistake.

They are reporting he is refusing and dismissing his therapists, while he is reporting to me that he is doing his therapy...I am not always there because the hours are varied. He is up then he is down...they want to see an incline with less down. But honestly its been less than 60 days since BRAIN surgery, and his meds were possibly off. He takes a truckload of dopamine. Id like to give his brain time to repair before everyone writes him off.

Sooooo....we had to have the what is it you want talk with him. IE do you want to sleep and move to long term care - which is basically God's waiting room - or do you want to get the hell out of here. If you want to get out of here you cant refuse therapy...you need to participate in your recovery and not try to manipulate the system with points or no points...you have to get up and do it...even if your tired...and then when you tire again push yourself for another couple of minutes.

He was ready to do wheelies in his wheelchair.

The next week will settle his meds in and see if there is some cognitive improvement.  I met a really great naturopath who gave the some good leads on some stuff for his immunity.

Steffi and Michi Naess are on their way into town this weekend for the wedding of Marty Ronson's daughter, Michelle.  Starting Thursday through the end of the weekend my blog posts may be sporadic as I plan to suck every minute of their free time into my soul.  After my joie de vie weekend,  I'll have my personal exit strategy discussion with him.