Good Morning friends,

Marty got weighed and he is back down to just under 105 pounds. :-(
The doctor has added some fluids and also is administering food via the TPN line as well as through the j-tube. 

Unfortunately it might make Santa Clara Valley Medical Center see him as not such a good candidate. But he NEEDs to gain weight to get any traction.

Right now I write this from Santa Cruz, as I continue to come home 2 days a week. Mondays I go in to the studio to touch base and try to help the folks keep Marty's dream alive there. On Sundays I try to get to church and then back to the house to help prepare the place, by making access easier for Marty. Here is a photo of stage one:

Kimberly and Mitch, digging in to help Marty

 Our thanks to Carolyn Jackson, Mitch Sakolsky, Kimberly Parrish and Helen Behar who came over to help out for our first Sunday work party. They brought food and friendship.

After we got the first part of the driveway finished we had a lovely supper and then Marty's daughter, Christine called us so we could video phone with Marty. So we all got to see him and he got to see us. That put a big ol' smile on his face. Love the technology.

So if you pray, visualize, think positive ot whatever you do...please continue to think of Marty healing and coming home with a stop over at Santa Clara Valley medical Center.

Our thanks,

Ginny & Marty



 

A Gentle Stranger

Friday, October 26th

Physical Therapy began in the chair for an hour today then after he was back in bed more exercises. So I have some photos to for the folks interested.

The discussion with the doctor and Respiratory folks was interesting. If he is weaning he is using calories, so he might not gain weight or gather as much strength. So...they will rest him over the weekend (no weaning :-( )  so hopefully he will gain weight and gather some strength.

It's the 3 steps forward two steps back dance.

In the afternoon, we had a visit from the chaplain , Betsy, who is a very nice tall lady with an Episcopalian background. She was in Marty's room when I got back from getting some ice water. They were having a pleasant exchange so I didn't interrupt but watched and listened for a bit. Then she asked him if she could "borrow" me. We went for coffee and had a very interesting talk. She said she had expressed to him that by the photos on the wall it looked as of he had led a very full and interesting life and he answered right away "and more to come". I was happy to hear that. Sometimes a person from outside can bring fresh eyes and ears. She and I had a really good exchange about the importance of hope, and noticing small improvements. She left me with a good deal to think about, and I was glad for the visit. I believe that Marty was as well.

In the afternoon Marty wanted to write something, so he picked up the small yellow writing pad and the pen and wrote this:

Melting...

Physical Therapist, Heather working with Marty on his core strength

Building Strength, one day at a time

Marty Jr. was here to visit with his "pops" today. he went by the house on Escalona to scope it out for improvements we need to make for Marty's return. here is  an initial rough sketch he's made. We are excited about how it's shaping up. More to come.

So all in all, Friday was a pretty good day. I am so grateful for that. 

Good night my friends and family, from the house in the trees, under a big bright moon.

Ginny & "Sir Winston" the wonder dog

a better day today

October 25th, Thursday

After yesterday it could only get better. And it did, a little bit. Thank God for that. 

When I awoke I began the day tired and dragged myself out of bed, showered and drove to Kentfield thinking he had Physical Therapy at 9:30. However for some reason they didn't come. Oh well.

They did arrive after awhile, he had started the weaning mode again , which means any activity can tire him and put him in distress. However, they got him into the chair and he did alright for nearly an hour. Then they put him back on regular settings and OT (occupational therapy) came in and did some exercises with him. He went back to bed, took a nap and all was good. Not a single problem or issue. A good morning!

The feeding formula that Marty had was obviously not being tolerated well, so they have changed it again and raised the amount per hour. I am praying this will be a solution that helps him gain weight and thus his strength. 

The team is holding it's breath, hoping he can be accepted to Santa Clara Valley Medical Center. It has such a fine reputation. God I hope he meets criteria there.

I met 3 different wives today with different and interesting (albeit very sad) stories. All of our husbands are in one of those beds tonight and we all spend our days there. A new sisterhood.  We arrived alone with them and now we meet one another in the halls or on a bench outside and visit and talk...a new "family of friends" a thread of understanding. Bless them all. So very hard.

Thank you friends for understanding. Thank you for caring.

Love,

Ginny

 

Here is a picture of Winston on the bed with Marty, while Marty watched the first game of the World series last night

 

5 facilities in 5 weeks

Well...I know there are friends and family who really do want to know what's going on, so for those who wish and those who care to know I am filling you in.

How to begin?

When we arrived at Kentfield (3 weeks ago now) Marty  was not gaining weight, but losing and was down to a dangerous 103.5 pounds. He was low on blood. How low? After one week they sent him to Marin General, where they gave him five units of blood. You and I have 10-12 at best. They gave him 3 units of fluids and a room with a view for three days and sent him back to Kentfield. If we had stayed nine days-Medicare clock would have begun again and we would be able to stay at Kentfield another 38 days. As it is we need to leave, vacate by the 31st of October.

He had gained weight there, mostly fluid and was doing well except that his lungs also had fluid on them and so they gave him lasix to bring down the fluid. Now his weight is going down down down again. So today they gave him a new diet a higher calorie liquid food through his j-tube, which of course gave him -you guessed it...Montezuma's revenge. Which as we all know ALSO contributes to malnutrition and needing fluids. What a vicious cycle.

I am reading Gail Sheehy's book, "Passages in Caregiving". She talks about catheters and how they lead to infections. So I asked if they had taken out the catheter that Marin General had given him and of course (because it was easier for the nurses) they hadn't even thought of it. So I asked nicely if they could take it out and they obliged. Marty said, but "It's been awhile and wasn't even certain if he could do the necessary duty without making a mess for them" I said, "Honey you have been peeing for 71 years without a god dammed catheter, I think your body will know what to do after only two weeks". Sure enough he did fine the very first time! I was very proud of him.

The Physical therapist was in at 9:30 am, and Marty asked for the RT to be there (smart man) while they got him up and in a chair. Even that was a major feat. He did fine, stood up on his own took many steps side to side...but just sitting up after 3 months is taxing. He did fine, however after an hour he needed to lie down and then, in the moving back to bed the trach got moved around and it caused him to not be getting enough air. Call to the RT (Respiratory therapist) and when the RT finally showed up, Marty's oxygen had started dropping , he was panicked ( and I wasn't happy) but he fixed it and we were sailing again.
His j-tube began leaking today, yup it was "stuck" nothing going in. Not meds, not food. Nothing. so they flushed it and today's nurse (who Marty thinks completely incompetent)  simply walked away and in 1/2 hour the liquid diet was all over him and the bed. The 3rd cleaning of the day began (which means moving him, the tubes and everything else) More calls to the Respiratory therapist (RT) to intervene so he can breathe again, without distress and his alarms going off.

Today I was talking with Marty about our application for Medi-Cal. I said it is a good thing that his name is not on our house because that will help. He wanted to write, I gave him the writing board he wrote " It's as if I don't exist" . I asked why, he wrote " No assets" I said, "Honey, our true bank account... it's like what Richard Hoover of Santa Cruz Guitars said"... "our wealth is in the relationships we grow and the community we gather around us in times of trouble" and" YOU are wealthy beyond measure". I wrote out the names of all the people who have gathered around us to help (it took quite awhile) and I asked him to really look at that for awhile. he did. Then I told him, "these people love you and are devoted to you. No amount of money can ever purchase that." Sometimes it takes a bit of a re-frame. He felt better after that.

Well it's very early , I am up again after a worrisome troubled sleep so I write. Today will be another day. 

The good news is we are looking to move next week to an excellent facility, Santa Clara Valley Medical center rehab. I am hoping Marty meets the criteria.

Thanks you and please write us at:
ginny@digitalmediafactory.com

Thank you friends,

Ginny Collins

This was Marty just one day after the j-tube was put in, before the perforated bowel and this whole mess began

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