Caregiving, the weaning process at home

Marty on Vent with trach, only able to speak with electronic Larynx box (shown beside him)

Marty came home on a ventilator on December 4, 2012. He wasn't able to speak other than on his electronic larynx device. It was difficult for him to communicate and frustrating for both him and those around him to understand.

Speaking Valve:

On our 3rd trip to the hospital a pulmonary doctor gave us a passy-muir valve to take home with us. It is other wise known as a speaking valve. Some said it might take days for him to get used to, but for Marty that was not the case. The very first time he put it on and he spoke we were all thrilled! Our respiratory therapist came to over see the process and we had clearance from the doctor, which is very important. It was very important that Marty be able to communicate during the weaning process so the speaking valve was a crucial first step. Here are a few photos I took off the internet:

Passy Muir Valve

Our respiratory therapist and I got together to review some tips for others, and an explanation of how we went about weaning Marty off the vent. 

When Marty was able to be on a pressure support of 25 he rested at night on a backup rate and we slowly decreased the respiratory rate over a few months.

In the daytime he was placed on pressure support and slowly decreased that rate as well. 

We began weaning him by having him off the vent during the day. We began by having him off the vent 2 hours in the morning and 2 hours a night. We did that for 5 days then increased it to 2.5 hours in the morning an 2.5 at night. And so on, 1/2 hour increase in the morning and 1/2 hour increase at night every five days. SLOW AND STEADY WAS THE CRUCIAL INSTRUCTION HERE.

He was placed on a Bipap at night.

When he got up to six in the morning and six at night The RT came and took out the trach, placing a smaller one with a cap. 

When Marty had his most recent trip to the ER he was off the vent a total of 17 hours a day. And they removed the trach in the hospital.

He is now home vent free and without a trach.

IMPORTANT: None of this should be done without a doctors guidance in tandem with the support of your pulmonary doctor and a trained respiratory therapist.

These are only the steps that we took, and my hope is it gives you comfort in knowing that weaning can be done at home, if you are fortunate enough to be weanable and have a team around you to support your wishes.

Caregiving at home, a few tips

Homeward Bound

On December 4th, five months after what was to be an overnight procedure. 49 days in the ICU and nearly 3 months in a rehab facility, Marty had had enough and we brought him home. We were signed up for Palliative care and he needed round the clock care.

I began to search for caregivers who could help. Where ever you are there is assistance and you need to ask for help and begin the search.

I tried keeping watch at night, and after a few weeks I completely broke down. There were trips to the commode many times a night, he requested comfort and pain meds many times in the night. By the time morning came I was spent..Our case worker gave me advice, get caregivers at night so you can be there for him during the day. We had already set up a giveforward page to help raise funds and there were fundraisers which helped us afford the care. Again reach out to your neighbors and community. here is our giveforward site:

https://www.giveforward.com/fundraiser/grd1/musicformarty

The search for more care resulted in faces that he knew, and my ability to come back to my center.

Marty was on a feeding tube and many meds per day. He needed suctioning about every few hours and trach cleaning as well as personal care. I was able to train the caregivers, from what I had learned. There was no need to hire a nurse at $60.00 an hour and some even came at only $10.00 per hour. But the average is $15.00 an hour. Especially if they are willing to be trained.

A Few Tips

Video monitor:

One of the best items I received was a baby video monitor. When I wish to go outside or go to a different part of the house, and can't have my eyes and ears on my husband, I can keep him with me. It's comforting for me and for him. There are many kinds, do a search on the internet and find what works for you. Mine also has the ability to talk to him from where I am, so I can let him know I am on my way if he calls out.

Primary care physician:

Our primary care physician makes house calls. She has a service like a concierge. She has a retainer and it was the best money we ever spent. One day after she became our doctor we had a company who does portable imaging bring the sonogram and x-ray machines come to our home. No trips needed to the ER.

Palliative care team:

We had nurses from the VNA, physical therapists, occupational therapists and a speech therapist help us on the long road back. We also had a wonderful respiratory therapist who helped up with a slow weaning process. A team, a wonderful team, crucial to his gaining strength and giving us confidence. They have encouraged Marty every step of the way.

Marty has had 4 trips to the hospital since we have been home. The last one lasted 3 weeks. We are home again, and as any caregiver knows it is not a steady trajectory upwards, but more like waves in an upward direction and sometimes you take many steps backward.

But we are moving forward.

In the next blog I will address weaning somebody off the ventilator at home.

new gig, caregiver

 Our Story, how it began

My husband Marty worked up to the day before he went into the hospital. He was climbing ladders lighting a film shoot. He had built our film studio from the ground up and it had become a cornerstone of the industry in our community. 

In July 2012 my husband, Marty, went in for an "over night" procedure. It resulted in a perforated bowel. He spent 49 days in Stanford's ICU.The damage from the sepsis did damage to his lungs, so  they did a tracheotomy and placed him on a ventilator. It came as a shock, out of left field. Nothing we were expecting. It was terrifying and surreal. Months of long nights sleeping with my cell phone, renting rooms and sleeping on couches and chairs. Every night was spent in prayer and despair. Fighting the fear and praying for guidance and strength, my advice? Find your core strength, (it is there whether you know it or not) and spiritual friends, reach out and lean on them. Ask for prayers... ask for help.

When his medicare days were up they shipped him off to a "Long term acute care rehab" facility. It was described as a specialty hospital where they could "wean him" off the vent. No guarantees.It was a 3 hour drive from home. I was one of the lucky ones, a friend loaned me her house to stay in and I had a cousin and his family who were close by. My husband's children came and spent days, nights on end. He had a few weeks when he began to gain strength and do a little better. Then he got pneumonia a few times and had 3 trips to a nearby ICU. Blood transfusions and days in isolation. He went to the facility to get weaned off the vent, but things weren't really getting much better.

After nearly 3 months in the rehab facility, they no longer felt there was anything that they could do for him and so we brought him home. Before we left the staff taught me how to suction him, change his trach and do all the things that I might need to do . It was a fearful time, however the only other option was to have him go to a sub-acute which I knew would be his end. If he were going through "end of life" at least he would do it at home. And I also knew he might just get better.
He was in a diaper, on a rectal tube and a catheter. He could barely stand on his own.

After 6 months of hospitalization he was sleep deprived, they had him on morphine, which he was weaned off of before we brought him home. I knew the morphine was taking his life force.

Palliative care versus hospice

Before our discharge there were many discussions about our options at home. The first one was hospice care..."end of life" to make him comfortable. The second lesser known option was "Palliative care"

The difference is that, although, with hospice the patient and family get a huge amount of help and support, it also meant there was no option to call 911 in an emergency. They might want him off the feeding tube and of the ventilator. They would be helping us facilitate his "end of life".

However Marty was clear, he intended to live.

Palliative care also specializes in comfort for the patient as well as support for the family. They would provide a physical therapist, speech therapist and occupational therapist. In our case the Palliative care team also provided a physician who would come to the home.

We chose Palliative care. It has proved for us the right decision for us. Marty came home and in two days was out of a diaper, catheter and rectal tube. He was getting up with a walker and using a commode. within 3 days we took him outside. 

Home provided the sleep and environment he needed for healing. I knew my husband, if he intended to live and had the support and environment to support that then he would live. Despite the doctors clear words that he would not recover, although they "hoped they were wrong".

More to come, stay tuned