inching forward

Hello,

Marty is home from the ICU a few weeks now. We are on a solid plan of weaning. 3 days of weaning began of 2 hours in the morning and two hours at night. That means off the vent and on his speaking valve. Then we up each session by 1/2 hour every 3-4 days depending on his ability to tolerate the sessions.. Today he had a total of 6 hours with no extra help with oxygen, a very good sign. Dr. Laurencin's thinking is to be sure he doesn't overdo it and have a set-back.

Marty still has some better days than others but we are seeing more good days than bad. 

He was having days and nights with anxiety and I had a talk with him yesterday, a pretty challenging talk. What I have heard from all doctors and therapists over the past five months is that his anxiety is real and yet he is the one is charge of his breathing and also his progress. He needs to know that he has to do the exercises he has been given 2-3 times a day and also needs to gain control over his own ability to calm himself and relax. He has that ability and nobody can do it for him...other than himself. Dr. Laurencin prescribed a sign at the foot of his bed that reads "SLOW RELAXED BREATHS". He now reads it and pays attention. He is gaining control over his own anxiety and thus control over his own progress. 

I said, "you have done so much and I know it's not easy, but it's time to stop paying attention to the problem and begin paying more attention to the solution...only you can do that" "We have a great team but most of the rest is now in your hands". We support you but you need to spend less time in bed and more time thinking about your recovery, no more "victim Mode". Hard to say and hard for him to hear. But he and I have never held back. He got it and today was much better. He was getting needier and more afraid and that had to stop, it was getting in the way of his progress. Today the caregiver came and I left, went to the ocean and spent time with my family. When I came home he'd had a nice shampoo and massage. they were watching a movie when I got home and he was smiling...

He hasn't gained the weight we were hoping for but he hasn't lost weight either and his weaning is progressing. The nurse and doctor are monitoring it and say we are on course and doing fine. It's a balancing act he uses calories when he is off the vent, and though he's spending more time breathing on his own and not losing weight we are moving in the right direction.

The doctor says he can have meetings once a week for only 30 minutes at a time. His first one was today. (We went over 10 minutes)

The doctor has increased his anti depressants a bit and adjusted some other meds. His nurse, Andrea is in contact at least every other day. He gets fluids 3 x's aweek via IV.We have gone back to square one on the supplements to add one at a time and watch his tolerance. Right now it's only high quality vitamens and some cannabis oil, as it helps a great deal with his mental status and relaxation. His dreams have gone from nightmares to good dreams.

We had a great benefit concert which he has been able to watch. It raised over $8,000.00 towards medical bills and cost of caregivers. We want to thank our friends and family who have given so much. 

Caregivers have been so critical because he needs monitoring and care 24/7. For much of it I have been around to either train or monitor them, now we have a few who are caring and reliable. 

Marty's friend Mitch has come by several times a week in support and even gone out shopping when I can't get away

 

Mitch bringing smiles...always

 

I am experiencing nearly constant pain which the nurse is convinced is triggered by stress and the physical strains of pulling him up in the bed or helping him in his daily routine, as well as lack of sleep. I am going to the doctor tomorrow to see what the diagnosis and treatment can be. At times it's made it nearly impossible to give him the care he needs when there is nobody here, which has been often. Less so now, and hopefully less and less and things get better. But as our case manager says...it's now on a slow upward climb and the long months are taking their toll and setting in, time to plan well the the long haul ahead and count on those who come because it is their job. The case worker from Palliative care said today "  The only one to count on here is the one who organizes and sees it all 24/7..."You Ginny, you need to get the support and help you need and can plan on and count on" and get the time away you need go to your family and let them support you." So I am spending the weekend at my aunt and uncle's and checking in for the basics, but mostly getting out of the house which begins to feel oppressive when you can't get away. I Love Marty and I love being home, but when you have to be somewhere without being able to leave, after nearly 3 months, it's time to get away.

So all in all we are still on the long slow climb upward. 
We have a great team
I am dealing with my own care as well

Please keep us in your thoughts and prayers.

With Love and gratitude,

Ginny and Marty Collins

From "Music for Marty" part 2, Jim Lewin, Ginny and Mary McCaslin

 :Photo Fred Arellano

 

Lacy J. Dalton Photo: Fred Arellano

The gift of speech

January 4th

Where to begin? So much has happened since our last post.

We were searching for a primary care physician.When Marty's secretions turned a greenish color we knew we had an infection brewing. Knowing an infection could be lethal I went in to high gear making calls. We found Dr. Grace Laurencin. After a payment of $825.00 for the first 3 months she arrived at our home the following day. That night we had a portable x-ray come to the house (No trip to the ER ) and an RN drawing blood for critical tests, plus IV antibiotics on board by 10 PM that same night. Best money I ever spent.

By Sunday Marty's pain was growing and the infection didn't seem any better...so Dr. Laurencin had him admitted straight to Dominican ICU. (again no ER) She was at the hospital when we arrived and sat looking at his history and labs for hours.

After 6 days in the ICU, many tests and bags of antibiotics and fluids he was ready to go home. Another Doctor, Dr. Paul Godin , a pulmonary specialist decided to be sure Marty went home with a speaking valve.

While at the hospital, Reverend Deborah Johnson arrived and spent a good healing session with Marty...I believe it made a huge difference.

Marty spent the first few days at home resting and then that Wednesday our respiratory therapist showed up and took Marty off the vent and placed the speaking valve on. Marty was talking AND breathing on his own. 

 

Marty speaks

The road will still have ups and downs. Dr. Laurencin warns Marty won't be up and around or ready for work for perhaps as much as a year. But he IS improving.

We had a visit from Dr. Randy Baker who brought an arsenal of supplements and a visit from a nutritionist . Marty is now on massive doses of vitamens, nutrients, greens and whey to boost his weight gain and overall healing process.

We had a meeting with folks from the studio so Marty could give his input on critical changes happening there. It tired him, but did his spirit a great deal of good. We know there needs to be a balance. Dr. Laurencin is looking at the overall picture and suggests only one event/meeting a week for him.

We continue with physical therapy and are wanting him to gain a pound per week.

Next Sunday the benefit to help raise funds for Marty's medical expenses will be at Don Quixote's. Marty's friends and family will be here to watch it with him via skype.

  

 Buy tickets here

http://www.brownpapertickets.com/event/313808

There is till a long way to go and Marty gets tired, and is on the vent at night while he sleeps. But we are encouraged and can see the light at the end of the tunnel.

There's a plan in the works to do a documentary/film to help folks who are dealing with complicated health issues at home . There is so much that we have learned and perhaps something we can add of value from this whole journey. Perhaps that is the reason this whole mess happened who can know.

We are grateful and pacing ourselves for the next steps on our journey.

Our deepest thanks to all who have graced us with support, knowledge, good wishes, prayers and love.

Ginny and Marty

Community support in full swing

Hello friends...

Marty had a trip to the ER last week, just thinking we might have had an abscess at the site of the j-tube. So we got to spend a day there with a lovely trip to the CT scan room. All to our relief that it was only a local skin infection called cellulitis and could be taken care of externally with antibiotic cream, another trip home via ambulance and we were tired but happy to be home.

Marty's physical therapist, Rich, has helped Marty make great strides...literally. Yesterday he walked with his walker 34 steps outside, sat in the chair in the sun for an hour then walked back inside. A very good day. His dear friend Fred Schuller came and they had good conversations about the BIZ.

Rich, Marty & Fred outside

Marty, Fred and Star outside

We have had so many friends and family help us there are just too many to mention. They bring a song, a smile, some food, or they hold me when I cry. We have good days and not so good days...but all in all you must know we could not do this without you and we thank you from our hearts.

Our dear friend Hayne has been an angel and come nearly every day and so she has seen many of Marty's first steps towards wholeness before others. Here she is with Marty as he sat in the rocker a few days ago. Here he is with little Jake and Hayne.

Marty, Jake and Hayne

We are still seeking an RN to help for a few hours a week, as well as a primary care physician. I have been able to complete some paperwork for Medical and we are getting into a rhythm. I could always use more sleep, but overall we are grateful and hopeful. 

There is NO place like home.

Thank you my dear ones. Oh and I have also started a calendar for folks who would like to help out:

https://nfca.lotsahelpinghands.com/c/643437/

And last but certainly NOT least the community is coming together to help us raise some more funding to offset our rising medical costs. here is the poster, YES and Lacy J. Dalton will be our guest of honor. So much talent and it will be a very special night, Sunday Feb 10th.

See y'all there!

Love

Ginny & Marty

Happy at Home

Celina and Marty outside

Marty's been home since December 4th.

Marty walked over 20 steps with his walker, 2 days ago.
He has been outside two times with his wheelchair where he sits on the sun and enjoys the sound of the fountain and the view in his own back yard

He now weighs 110 pounds, fully clothed. a five pound weight gain in 2.5 weeks

The various alternatives we are using are as follows:

Cannabis oil (the doctor suggested placing a few drops right into his formula in his feeding tube)

TumorX  formula:The only doctor who would tell me his condition is not only hopeful, but reversable and spent 45 minutes on the phone helping me
check this out:

http://www.tumorx.com/cachexia_cancer.html
He was diagnosed as cachetic at Stanford, a scary proposition, but there is help.

Probiotics, he had constant diareah  from the antibiotics and now we can reverse it. Have reversed it.

Spirulina

"Mother's Milks" Marijuana tea. It helps with nausea and anxiety.

Pasteurised eggs with Goats milk (used for starving children in impoverished countries) , we shake it, add lots of cold water to thin it for the tube. Enzymes can't have heat or they are useless.Add the enzymes, probiotics, liquid iron and spirulina.Shake again  Then strain it by putting through the double brass coffee filter to be certain nothing will clog the tube.

and we make a soup at night, usually a chicken soup, well filtered through a brass coffee filter so we don't endanger clogging the feeding tube. I thin it with chicken or beef broth to a consistency that won't clog the tube.

He continues to be at goal with his hourly feeding formula which is 70 ML an hour, more than at any time at any hospital or facility.

Okay so there's no more catheters, or caloric flush, his spirits are mostly better and the team has said they are happy he is doing well, much better than they expected.

His son and daughter have been here and their help is appreciated. Christmas was low key but wonderful.

Visits with friends have kept me from sinking into a deep hole of sadness , one night Julie Rix and Renee Godette came and we even had a sleepover when Renee stayed, THAT was a blast!

Our friend Hayne Bendick continues to save me by bringing whatever we need, even green beans for Marty to feed the dogs

So here we are
hoping to continue to gain ground
I am bone tired with little help. There are caregivers who I spend time training. If I am fortunate they will learn enough that he and I trust them enough so I can leave to bank and run errands. We shall see. I spend the night on the couch and give him what he needs. It's better than the hospital.

I am tired bit oh so grateful. Most grateful especially for the Palo Alto medical Foundation team and their Palliative care team who bring nurses, a doctor and therapists. Could not do any of this without theor wonderful support!

Thank you, Thank you!

And as always

Much Love,

Ginny and Marty

looking good

Hello friends and family,

As I write this, it is a little after midnight and all is quiet. There is a caregiver watching Marty, so I am able to lie in bed and catch up before I nod off to sleep.

Marty had a very quiet day, which means he had a chance for some well deserved down time and rest. He was happy to get a soothing warm "bath" and we washed his hair with good quality shampoo. We used french milled mild lavender soap, and he felt relaxed and comforted by it. After that I gave him his favorite magazine, "American Cinematographer" and we both sat quietly and read together side by side. It was delightful and felt wonderful to do something that we did often before this all began, a small return to normal activity. 

Last weekend the kids and grandkids came by to decorate the tree. It was bittersweet for me...The ornaments from years past, brought tears to my eyes as I remembered the times we would decorate the tree together and reminisce over each special ornament, like the one from our first Christmas together, and the beautiful one that looks like the church where we were married. He was having a hard day that day so he wasn't really able to enjoy it as we hoped he would. He was in pain and not much brought a smile to him even though we tried. 

The next morning we sat on the couch and read the newspaper and had coffee together as a family. He was snoozing in this photo..

The tree is lovely and the next day he was able to enjoy it and since then he has looked at it and smiled many times and said, "It's beautiful". We leave the lights on at night as we always have in years past. So he sleeps with the glow of the Christmas tree a few feet from his bed. 

Marty's daughter Chis gave him a shave and he looks like a new man!

I am learning how critical it is to keep visits appropriate to his energy level. People and activities can tire him easily, especially if he is having a "not so good" day. Our caseworker says it's crucial that I keep the communication of his needs front and center. I knew that but it was really nice to hear it from her and feel I have "permission" to do that. And she told me that not only do I have permission but she has given me those marching orders. For Marty's sake as well as mine. It's not easy being a "gatekeeper" of sorts but it's crucial to his healing since he can't really speak for himself. Marty and I have discussed it and are working it out, he says he is depending on me to help communicate his wishes to people. 

We want the visits to continue as it's healing for him to feel the love, it's just that if it's getting to be tiring for him, then he and I are working out signals so I can let people know when it's time for him to rest instead of engage. His caseworker says that we are both still recovering and Marty is still fragile, she is instructing me in how to set a few rules to live by.

So PLEASE continue to schedule some visits, just know that in the middle of  a visit if he signals he needs rest then we might have to let him have that quiet time again.

Marty is learning to use his walker, regaining his balance and strength. He will most likely go out in his chair again tomorrow to sit in the sun. The doctor will come by and I look forward to her assessment. His caseworker was really surprised and happy at how well he is doing. So dear ones thank you for all your prayers, food, calls, cards and love. keep it up...

It's WORKING!

Many blessings,

Ginny Collins

Home sweet Home

Dear ones,

Marty is home. We left Kentfield on Tuesday via ambulance on a smooth ride home...no rain, just about perfect. The sunny day between storms.

 When Marty got home and realized he was home at last, I gave him his medicinal tea and in 15 minutes he was smiling like a cheshire cat. Marty Jr, Christine, Savannah, Mitch, Paul and I were all there to witness the glorious moment. There were tears and a few of us wept openly from relief, joy and the realization of what had been accomplished for this wonderful man.

Marty sleeps when he wants to sleep for as long as he wants. If he needs anything we attend right away. Whether it's meds, repositioning, getting him up, handing him something holding his hand...anything. (No more catheters, no more waiting for nurses or walking the halls searching for assistance.)

He is doing better a little bit every day.

His doctor came to our house and spent a good deal of time. One thing she did was order a reclining wheelchair, which we used today. Marty went outside, down the gentle ramp my cousin Nick Mitchell built and on to the back patio. We sat in the sun and there was laughter and there were many smiles.

First day outside in the reclining chair

His friend Paul Stapleton Smith flew in from Arizona and was essential in the transition, I can't thank him enough for holding my hand through some very dark hours.  

My brother, Mitch, flew in from Canada for the second time since the nightmare began. He helped get the house ready and led the charge with hard work by a loving and willing crew: Mitch Sakolsky, Jean Doyle, Hayne Bendick , Nick Mitchell, Sharon Allen, Celina Guitierez, Sheri Wrachford, Charlie Brown and many more.

During Marty's last week in the hospital old friends who work with Marty came by to share stories.  Here is a photo of Paul with Andy Olsen.

Paul Stapleton Smith and Andy Olsen

My brother Mitch came from Canada for the second time since this all began. We were preparing to bring Marty home with dire predictions from his doctors. They said if there was any chance that he could recover it was only at home. Clearly now we know that home is restorative in and of itself. Here is a photo of my brother talking about the Kindle he bought as a present for his wife. Marty was curious about the technology.

Mitch showing Marty the Kindle

Only one day after Marty got home he sat at the side of the bed for the first time in a very long while ...here is a photo of that precious moment:

Sitting bedside for the first time in a month, first day home

Thank you one and all for your support. After only two weeks of 24/7 care our funds will be extremely low. Our wish is to get him off the vent and back to eating. I will be cutting back on the 24/7 care and getting help in the hours only necessary/ Hopefully he will be stronger by then and we will have less need for hourly care.

If you would care to help us defray costs Here is a site, even a tiny bit helps...So many have given and it has allowed us to get Marty the care he needs. We thank you from our grateful hearts, he is doing very well at home and it's only possible because of your generosity. Here is that site:
http://www.giveforward.com/musicformarty

If you'd like to help with other things then feel free to email me and I can add you to the list of helpers.
ginny@digitalmediafactory.com

Many of you have been kind to ask me to tea or to a show. I am not really able to leave home right now. The help we do have are not nurses, but CNA's. Some know the vent and the feeding tube, some do not. Many of the tasks take two people. If Marty Jr. is here or another able person , then I am able to leave. Otherwise I am the one who assists.That will change as Marty gets stronger. So stay tuned.

We feel truly blessed. And I am beyond happy to be home with Marty. There is no place I would rather be. When I can take a break, like tonight...I walk to the top of the property, sit on the deck and look out over the treetops to the ocean. I am in heaven to be here with him and the friends and family who surround us. We have had friends drop by with food and gifts, or just a hug and a kind word.

Tracy Parker's sister Carol made him a beautiful quilt made with prayers and love ( and many dollars pinned as well :-) Tracy brought it today, a sweet visit...thanks Tracy! And thank you Carol!

Carol's blanket of love

 Marty lies beneath a blanket of love safe and sound and most of all...

Resting and healing.

Blessed be

Leap of faith

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