Dear ones,
Marty's journey is going in a new direction. Last week we began discussions with his team, here at Kentfield rehab about Marty's options moving forward. After days of thoughtful discussions with them, Marty's family, my family, close friends and counselors and most of all, Marty...it appears the road will lead us home.
Marty continues to have complex medical issues, he is still vent dependent, his immune system is highly compromised and he has not been successful at retaining calories. Any one of those is dangerous, and having all three make for a fragile person. It means the decision to come home becomes a leap of faith. Faith that the home environment will provide something that will have a healing effect beyond something he can receive in a sub-acute care facility, which is the only other option.
Marty told us this week, "I want to live". Which is a much more life affirming statement than, "I'm done".
He has been receiving lovely visits from dear ones who have traveled great and small distances to express their love, affection and deep admiration. The staff at Kentfield are gracious, caring and deeply committed to his healing and care. We are extremely grateful for them.
My brother, Mitch and Marty's long time friend, Paul-Stapleton Smith are here with me and are helping with the mountain of logistics. Our dear friends Hayne and Mitch are also helping out on the home front as well as Celina and several others.
We have spoken with the Palliative care team at PAMF and they are helping arrange for a pulmonary doctor, nurses, respiratory therapists and others who can come to the house to assist with Marty's healing. Palliative care is a way to help give us the support and comfort Marty needs if he wants to heal and get better. It is not hospice, our current plan is to get him home to heal. PAMF provides people with critical illnesses intervention and therapies, even at home.
We will need and nurse at home 24/7 and they start at $30 , and go up to $60 an hour. Our current funds will not that sustain for very long. If you care to help with Marty's comfort and care you can through this site, feel free to share:
http://www.giveforward.com/musicformarty
On Monday we began training on the ventilator. And the house had a thorough cleaning, We are making arrangements for equipment and such.
We are hoping the transition home goes smoothly. .. please help us hold that vision.
“. . . Where, no matter how things may ever seem, you'd be bathed in love, surrounded by friends, safe and sound in your very own bed. And where, upon waking, all that you loved and learned in that lifetime would remain with you, and all that scared and threatened you would only have prepared you for even more love and learning in the near future . . .”
(from tut.com “Totally Unique Thoughts”)
Many blessings and much love,
Ginny MItchell Collins
and team Marty
Friday, November 30, 2012
Sunday, November 11, 2012
A room with a view, Marin General
Whew,
Well, here we are a Sunday approaches and we are at Marin general.
Marty was having some difficult days at Kentfield, just when we would get through one challenge, another would pop up. On Friday his doctor called Stanford and told them it was time for him to get to a place with a higher level of care. Stanford agreed and we were ready to transfer back to Stanford ICU. Then it turned out they didn't have a bed. It was a very good thing. Marty was transferred quickly to the ER at Marin General. I went with him of course. He said he'd be nervous if I was driving behind them.
He was in his ER room less than a minute when his trach had a blockage and he couldn't get air. His heart rate went over 170 and his blood pressure dropped. The ER team flocked to him as I chased his ER doctor to his office and ushered him back to Marty's side.(As gently as I could without screaming, but it was an urgent prodding and I wasn't taking no) The team ushered me out of Marty's room as they went to work. Marty had become non responsive. I was more frightened than I have been since this all began. I called Rev D, who picked up and said a powerful prayer acknowledging Marty's powerful life force and more.
They brought the chaplain over and tissues, and I prepared myself for whatever would come next...minutes dragged on and it was surreal.
The doc came out and told me they had gotten him stable and they rushed him up for a ct scan to see if he had a blood clot in his lungs, my mind was reeling. I went with them and as he came out from the CT scan I held his hand as they wheeled him to his room in the ICU.
Well, here we are a Sunday approaches and we are at Marin general.
Marty was having some difficult days at Kentfield, just when we would get through one challenge, another would pop up. On Friday his doctor called Stanford and told them it was time for him to get to a place with a higher level of care. Stanford agreed and we were ready to transfer back to Stanford ICU. Then it turned out they didn't have a bed. It was a very good thing. Marty was transferred quickly to the ER at Marin General. I went with him of course. He said he'd be nervous if I was driving behind them.
He was in his ER room less than a minute when his trach had a blockage and he couldn't get air. His heart rate went over 170 and his blood pressure dropped. The ER team flocked to him as I chased his ER doctor to his office and ushered him back to Marty's side.(As gently as I could without screaming, but it was an urgent prodding and I wasn't taking no) The team ushered me out of Marty's room as they went to work. Marty had become non responsive. I was more frightened than I have been since this all began. I called Rev D, who picked up and said a powerful prayer acknowledging Marty's powerful life force and more.
They brought the chaplain over and tissues, and I prepared myself for whatever would come next...minutes dragged on and it was surreal.
The doc came out and told me they had gotten him stable and they rushed him up for a ct scan to see if he had a blood clot in his lungs, my mind was reeling. I went with them and as he came out from the CT scan I held his hand as they wheeled him to his room in the ICU.
Waiting outside as they readied him the chaplain stayed with me quietly as I continued to breathe per REV D's instructions. My mind was calming my spirit was rising. I realized we'd made it through and gradually the fear subsided. I went into his room and they were working quickly efficiently adding bags of fluids, electrolytes, vitamens, antibiotics and more. They believed it was pneumonia, and perhaps more infections, maybe c-dif and sepsis. He already looked better. The chaplain was still beside me quietly holding my hand and then Kathleen Cutter arrived and Marty Jr. soon after followed by Rich and Christine. The family surrounded us with love and support. we huddled together, grateful.
It is clear that there was little time to spare and the fact that there was no bed at Stanford and the resulting transfer to MG, meant that when the blockage happened he was not in and ambulance in Friday traffic through the bay area but safe in the ER.
Winston ( our Yorkie ) stayed over with the Cutters and got spoiled by the kids. Marty Jr., Chris and I camped out at Marin general sleeping on couches and chairs, not wanting to be anywhere but where Marty is.
Yesterday looking at Marty, his color and vitals were better. I said, "nice to have you back" and he said " I didn't go anywhere". And I know he isn't planning to be anywhere but right here with all of us, healing until we go home.
The diagnosis is pneumonia, he's getting what he needs.
I am confident we continue to stay in "all needs met" consciousness.
Thank you for your continued support.
Much love,
Ginny
Wednesday, November 7, 2012
Wed, Nov 7th
Early morning, Santa Cruz.
Marty was continuing to lose weight and had not enough energy to respond over the weekend. So we were all very worried. Then his heart rate went sky high and his blood pressure dropped. His doctor was gone as was his case worker. Thank God for the nurses. The interim doctor stepped in and dropped back on his meds, gave him fluids and some protein and it seems to have worked. I don't know his current weight, however yesterday he was looking much better and responding really well. He also seemed in better spirits.
Before his doctor left last week, he had ordered a CT scan. The scan was to be with contrast of his abdomen to see if they could find a reason for his belly pain and a reason for the weight loss.So yesterday we were back in an ambulance to Marin General for the scan and then back to Kentfield. Beautiful day for a ride but, still it's kind of traumatic for Marty and by then he was off any anxiety or pain meds.So when he gt back he was exhausted.
We watched the early election results come in and I watched to be sure he was settled in and alright, before I drove back to Santa Cruz.
We were hoping that Stanford would take him back, as his doctors there would really like that. However it doesn't appear that Stanford is taking any responsibility in all of this. So ...we are looking at possible actions to help get their attention.
Marty Jr will be with him today and I will be at DMF for a few meetings and then come home to practice for my gig tonight with Hot Club Pacific. Marty was clear that he believed I should come back and sing tonight, even though it's hard for either of us to spend a day apart. I am comforted knowing his regular doctor returns today and Marty Jr is there to help be sure nothing falls through the cracks.
Now this main issue is still the weight loss which is what began this journey in July. Kepp us in your prayers. Marty is fighting the good fight and staying strong. We are confident we will egt through this and get him home.
Thank you my friends,
Ginny & Marty Collins
Early morning, Santa Cruz.
Marty was continuing to lose weight and had not enough energy to respond over the weekend. So we were all very worried. Then his heart rate went sky high and his blood pressure dropped. His doctor was gone as was his case worker. Thank God for the nurses. The interim doctor stepped in and dropped back on his meds, gave him fluids and some protein and it seems to have worked. I don't know his current weight, however yesterday he was looking much better and responding really well. He also seemed in better spirits.
Before his doctor left last week, he had ordered a CT scan. The scan was to be with contrast of his abdomen to see if they could find a reason for his belly pain and a reason for the weight loss.So yesterday we were back in an ambulance to Marin General for the scan and then back to Kentfield. Beautiful day for a ride but, still it's kind of traumatic for Marty and by then he was off any anxiety or pain meds.So when he gt back he was exhausted.
We watched the early election results come in and I watched to be sure he was settled in and alright, before I drove back to Santa Cruz.
We were hoping that Stanford would take him back, as his doctors there would really like that. However it doesn't appear that Stanford is taking any responsibility in all of this. So ...we are looking at possible actions to help get their attention.
Marty Jr will be with him today and I will be at DMF for a few meetings and then come home to practice for my gig tonight with Hot Club Pacific. Marty was clear that he believed I should come back and sing tonight, even though it's hard for either of us to spend a day apart. I am comforted knowing his regular doctor returns today and Marty Jr is there to help be sure nothing falls through the cracks.
Now this main issue is still the weight loss which is what began this journey in July. Kepp us in your prayers. Marty is fighting the good fight and staying strong. We are confident we will egt through this and get him home.
Thank you my friends,
Ginny & Marty Collins
Friday, November 2, 2012
Friday, November 2nd,
A beautiful fall day. Maple leaves in all the autumn colors carpet the ground. Halloween has come and gone and Thanksgiving is around the corner.
Today Marty had a "swallow test". They gave him apple juice with blue dye in it. Then they suctioned him to see if the blue dye had gotten in his lungs and it had NOT! Which means he is one more test from being able to eat and drink again. (although his doctor here says it's not a certain thing while still on the vent...) I envision Marty eating pumpkin pie at Thanksgiving!
His weight loss seems to be halted at a scary 104.5. But it has stopped!We will look at his weight again tomorrow to see a "trend". (Hopefully up and steady)
Tracy Parker, Patti Maxine, Kath Cutter and Marty Jr visited on Wednesday, for a sweet day of song and good company. Lots of smiles.
It is possible that someday soon Marty will be off the vent, which is what this is all about. Then it's home to Santa Cruz, because there is a good rehab there (Dominican rehab)
Keep that vision happening my friends.
Marty home in Santa Cruz for Thanksgiving!
 | ||||
| Good medicine |
Monday, October 29, 2012
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:
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
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 |
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
Friday, October 26, 2012
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:
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
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
Thursday, October 25, 2012
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
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
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