A New Year

Hello Friends and family,

Once again it's been awhile since I have been able to give an update and a WHOLE lot has happened since the last time I posted on Marty's progress.

In October Marty went into Dominican Hospital for two intense procedures. The first was an operation, where they opened him up to put a new j-tube in a new location, the second (done during the same session) was an esophageal dilation, to help with Marty's speech and swallowing. They both went very well. Then as a wonderful surprise for the first time since this entire ordeal began, Marty was well enough to participate in acute rehab, 3 hours a day. he was there for 2 weeks.

Marty in Rehab

Marty still has several pressing issues, he gets short of breath, has difficulty swallowing and eating, which makes it difficult for him to gain weight. He is working on it. 

In November, we got notice that it was time for us to close our business, The Digital Media Factory. So the huge move continued and has only now been winding down. 4 months of moving, organizing, giving things away as well as selling things. We have storage spaces and have gone from 15,000 square feet to a single car garage and a 10x20 storage space. Here is a very nice article that appeared in the SC Sentinel, which helped us a great deal:
http://www.santacruzsentinel.com/santacruz/ci_24626704/santa-cruzs-digital-media-factory-holds-liquidation-sale
The Digital Media Factory is Marty's baby, so we have changed the website and have moved our business to our home office. We even have some new wonderful clients and are putting "the band" back together.

We have been able to go for walks at lighthouse field, have Thanksgiving and Christmas with our friends and family. We even got to visit our friend Tracy Parker on her boat. 
And as always there are movies and singing. Life has changed and it is not always easy, but as long as Marty keeps fighting his way back, we keep on moving forward one day at a time. 

We have had support from friends, family and as always our doctor Grace Laurencin and her team, the VNA as well as our neighbor Tony Britton who keeps coming to help with Marty's rehab in our home. (IMAGINE!) and so many more....so many more.

Thank you one and all for your love, concern and support.

Here's to "ONE GOOD YEAR!"

With Love,

Ginny and Marty Collins

A family moment

Lighthouse Field

June, Vent free and have our living room

Dear friends,

 It's been awhile since we have posted here. And so much has happened. Marty went to Dominican hospital in April with extreme pain. He was there for three weeks. It was a scary and trying time. First diagnosis, Peritonitis . Swelling in his abdomen and and internal infection. Then he contracted C-diff, which was going around the hospital. We wore gowns and were in isolation for weeks.Adjusting his meds for pain, delusions and fear from meds. They replaced his j-tube two times, the first one leaked, the second was a success. he became de-conditioned and appeared to lose all the physical ground we had gained.

 On the good side they removed his trach and he is now breathing on his own....VENT FREE!

He came home and now after over two months he is walking with a cane and doing his daily exercises. We have a long way to go, it is slow , yet we are heading in the right direction.

His stoma ( the hole from the trach) has not closed yet and there are swallowing and breathing issues still.

He has pain and nausea on a daily basis but we are working on that

We thank our Doctors, nurses, therapists, healers, caregivers, friends , family and community who continue to assist us in the healing of the body temple of Marty Collins.

Marty spends time at night in his bed, no longer in the living room, but in the spare room surrounded by his favorite photos of family and surf., and his days in the recliner in the living room, steps to "Normal".

Marty...crunching numbers

 The folks from the Digital Media Factory and the Digital Signage Factory are in touch and continue to seek his guidance. Marty's involved in the design of the stage for the upcoming benefit concert on July 13th.

Sista Monica Parker, Tammi Brown, Tracy Parker, Celina Gutierrez, Howard Wright, Bill Laymon and Ginny Mitchell will come together in an evening of song, a celebration of healing and hope.

All monies raised will go to help defray the costs for Marty's skyrocketing medical expenses.

Here are a few photos of friends and family who have visited and lifted our spirits:

Kaelyn, Jordan, Marty Jr and Marty Collins

 

 

Gary Partlow and Kimberly Parrish

          Thank you dear friends and thank you Sandy Frye for this great poster!

 

Our love and blessings, we envision a night for everybody who is having a difficult time to come away with hope in their hearts and a bright vision for a positive future.

All our appreciation and love,

Ginny and Marty Collins

ginny@digitalmediafactory.com

(831) 212-5416 cell

I won't be able to help you with ticket sales however, so sorry

kinda busy here :-)

upward and forward

Marty continues on an upward path. Not without good days and bad, but forward is the word form all the doctors,therapists, nurses,caregivers and those who watch his progress. he continues to astound us all.

Currently he is off the vent 13 hours a day and is inching towards the day he will be off the vent! Hopefully by mid-April.

He gains strength in his arms, legs and balance bit by bit each day.

He has had two outings to light house field to observe steamers lane:

On my birthday he surprised me with a beautiful cake and a few friends surrounded us in the evening. I asked if he would sing a song for me...and Mitch Sakolsky pulled a guitar off the wall and everybody sang...including Marty. He was happy to know he could still sing, it lifted the celebration...and his spirits.

We have a very solid support system with our caregivers.They have learned the intricate duties, and I am confident with them  enough that I can leave to do necessary things without too much worry.

Marty had an infection two weeks ago now behind him, treated by fluids and antibiotics.So the food he was taking was on hold. He is now taking food again, avacado, mashed potatoes and more. 2 teaspoons an hour.

His lungs are clearer and his mentation is clearer.He is up for 30 minute visits, but we are keeping it to close friends and family for the time being. Mostly because of his need for certain privacy issues and because while he wishes to talk and communicate...it tires him and uses his energy reserves which deplete his calorie intake.

There will be a viewing of a project which he has helped to shepherd and it will also be a benefit for his medical costs. The doctor has aid he can attend with precautions. Here is the invite:

 

This will be the first event Marty 

will have attended in 8 months

It's very important to him , because Eike and Sheila are great artists, they have been supportive friends and he is excited to see this beautiful animation piece he helped initiate before he began this journey...and now it has come to fruition.

We hope you will join us!

Blessings to you all.

Ginny and Marty Collins

March 22, 2013

 on a side note: My doctor has determined that I have high blood pressure and an ulcer, plus depression which she is treating with meds. I feel much better and more hopeful every day. This allows me to be more present and a much better partner and caregiver for him. I am grateful. It lessens his worry about me, which was a concern and stress to him.

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