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