Our Mexican Camino: Ending MS and Finding New Life: March 27, 2017: Day +127

Monday, March 27, 2017

March 27, 2017: Day +127

There was much to do today with anticipating Doug's coming home. I needed to get hold of the transition coordinator to make arrangements for Doug's transition. It was not until late in the day that I was finally able to reach her. I told her that I wanted to talk to the doctor regarding Doug coming home. After a lot of thought, I am very concerned that they are discharging him too soon. I am really worried about him not getting 15 to 20 hours a week of therapy. He has been improving everyday and the next couple months are critical if he is going to walk again. His regular doctor is out of town, but the doctor on call is suppose to call me before 11:00 tomorrow morning.

I made several phone calls to agencies for personal care providers today. I found two that I felt pretty good about. And so I set an appointment with Assisting Angels Home Care for tomorrow and will follow-up with Allegiant Home Care on Wednesday. I decided to go with an agency rather than hiring a person myself because I am not sure how long Doug will need the care and how many hours he will need. He is improving all the time. If I hire someone, I will feel more committed to longer term employment. And so for now I think working with an agency will be the best idea for us even if it will cost twice as much.

With the transition coordinator, I set-up another family meeting for Wednesday. I want to hear how the team thinks that I am going to care for Doug 24 hours a day 7 days a week with all his needs. I want to hear if they believe that Doug is continuing to improve and I want to hear from them if they think he is going to be able to make progress so that he will walk with therapy for only 4-6 hours a week from Home Health.

Finally I did a few chores around the house. I reorganized our closet to make room to put our laundry in there to allow for a little more room in our bedroom for Doug's equipment. I also fixed a standing mirror that got broken when Doug fell a while back. Fixing things is not necessarily my best skill and so we will see how long it lasts. Finally I did some cleaning of the living room furniture. This is something that had needed to be done for a while. It was time to freshen the room up a little bit.

I spent the evening with Doug. We talked a little more about him coming home on Friday. He really wants to come home. He told me that he is making progress in transferring and standing. He thinks he will be able to get in and out of the car. I am not so sure. But I know that he is highly motivated to leave the hospital. I want to make the right decision for both of us. Tonight we have much to pray about.

Holy God, we come to you seeking direction. Guide us as we seek answers to important questions and guide us in our communications. Strengthen our resolve to do what is right and just for both Doug and I. We have many challenges still ahead. Help us to not to be overwhelmed with the uncertainty of the future. Give us your peace as we move forward in faith. Amen

1 comment:

Sherry K-BarrettMarch 28, 2017 at 12:43 AM
Listen to the voice inside, if Doug is not ready, you are not secure in that, you will find the right words to reach the right ears. The spirit and your clear reasonable mind & heart has wisdom. It will work. Going home is so much more than answering Doug wishes. He knows that too. Much love, hugs and prayers are with you. Thanks for all you are and all you give.
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About Doug

Fr. Doug Yarbrough was diagnosed with Multiple Sclerosis in 2008. Although judging from his MRI scans he probably had it for many years prior to his diagnosis. Since the diagnosis he has experienced continuous progression of the disease resulting in more and more disability.

Today he is dependent on an electric wheelchair to get around outside of his home. At home he uses a walker to walk short distances. His eyes loose focus easily and he cannot read. This is difficult for someone who has always been a voracious reader and life long learner. He experiences extreme fatigue. Most days it is all he can do to just take care of his own personal needs. We are grateful he can do that and fear the day that he will loose these skills. But with the progression of this disease that day may not be far off.

This is not the person Fr. Doug has always been. Many will remember him as an active member of his family, church, community and state. He is an ordained priest in the Episcopal Church. As a priest and community leader he has been a passionate crusader working on behalf of the poor, the abused, the homeless and minorities. He has been a husband, a father and a grandfather. He has always been the person who helps others.

Fr. Doug is a learner and believes in education to serve the common good. He has a B.A. in Education and Philosophy, a Master's in Counseling and a Master's in Religion. He has a doctorate in Educational Psychology. His education nurtured his thirst for learning, to make God known to the world and to serve others in the example of Christ. His favorite Bible passage is from Micah 6:8. In the New English Language Version of the Bible it reads "He has told you, O man, what is good; and what does the LORD require of you but to do justice, and to love kindness, and to walk humbly with your God?" These words have framed his work in the church and the world.

In 2005 he was awarded the Canyon County Humanitarian Award for his contributions, care and concern for the most needy and marginalized people in Canyon County. He chaired the Nampa Shelter Coalition board and was on this board for many years. He also served for many years on the Nampa Family Justice Center and the Idaho State Domestic Violence Boards. He founded the Open Arms Baby Boutique in Nampa. This is a resource center for low-income women. The women earn points for prenatal and postnatal check-ups. They may then trade the points in for diapers, baby clothes, furniture, etc. He was on the "Success by Six" Treasure Valley committee. Fr. Doug served on the Mercy Hospital Ethics Board. All this he did while pastoring a church and serving on many church boards and committees.

After many years of service, Fr. Doug is now in need of your help. He is in the fight of his life to stop the progression of this horribly debilitating disease. Up until now, there has been little hope, but upon returning from a pilgrimage of prayer for healing we learned of a new stem cell treatment that some are calling a cure. This treatment is HSCT (Hematopoietic Stem Cell Transplant). Using this treatment the patient's own stem cells are harvested, then the patient's immune system is killed using chemotherapy and then the patient's own stem cells are transplanted back into their body. It works similarly to a reboot of a computer. The immune system is being rebooted. This treatment is in Clinical Trials in the United States, but in other places in the world it is being used as a treatment for MS. Worldwide data shows that more than 80% of MS patients receiving this treatment see an end to the progression of the disease and many see a reversal in disability. The brain is able to heal from the bodies own attacks on the myelin insulating sheath around that surrounds nerve fibers

Unfortunately HSCT treatment is expensive and not yet covered by insurance. To get this treatment he will have to travel outside of the country. To help pay for this treatment family and friends of Father Doug are raising money to help pay for uninsured medical expenses associated with HSCT (HEMATOPOIETIC STEM CELL TRANSPLANT) to halt the progression of his Multiple Sclerosis. We don’t have time to wait for Clinical Trials in the US. Fr. Doug is rapidly progressing in disability from this disease. We have to act now if we are to save and hopefully improve the quality of Fr. Doug’s life. We have a goal of October 15, 2016 to raise all the money needed. This is the earliest possible date that the treatment may be available.

Fr. Doug has chosen to fund-raise with HelpHOPELive in part because HelpHOPELive assures fiscal accountability of funds raised and tax deductibility for donors. Donors can be sure that funds donated will be used only to pay for unreimbursed medically related expenses. To make a tax-deductible donation to this fundraising campaign, click on the Donate Now button.

For more information, please contact HelpHOPELive at 800.642.8399.

Thank you and God Bless you for your help!

Monday, March 27, 2017

March 27, 2017: Day +127

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