March 30, 2017: Day + 130

Today really felt like a day of transition.  I had to do some more serious shopping for a Home Health Agency.  I found out yesterday from our Transition Coordinator that St. Luke's Home Health is not in network our insurance. As so she gave me the list and I selected another agency.  I gave them a call and went through the interview and shared Doug's needs.  Thirty minutes later she called to tell me that our insurance is out of network.  And so I tried another agency.  This time I think we have a winner.  I visited with Progressive and they will accept our insurance and so I met with Amy our transition coordinator this afternoon about our new choice.  I am hoping that everything will be set-up for Monday.  Thankfully, Doug was not discharged today!

I observed Doug's physical therapy again today. He was able to push his manual wheelchair from his room to the therapy room.  This is really a significant distance.  I was so impressed.  He is doing such a great job of using both hands to push.  His therapist worked with him on pulling himself up into a stand with the parallel bars.  He was able to do this mostly independently.  He was able to stand for a few minutes holding onto the bars, the he would start to droop and the therapist would verbally cue him and he could pull himself up to a straight position.  She also showed us some parallel bars that we can make using pipes.  I feel good about this because I think it is so important that Doug get into a standing position and gets the opportunities to walk.  He needs to try walking to walk I think.

Tomorrow, I will observe his occupational therapy again. He is making such great progress with turning from side to side and is beginning to swing his legs over the side of the bed with support.  He can almost put his shirt on by himself. He feels like his progress is slow and everything takes time, but he is doing so much more than last month.  I feel so hopeful about the future.

And so we pray:

God of Hope and Promise, watching Doug these past two days in all his therapies has been so hopeful and promising.  It delights my heart to see significant increases in his skills.  He grows in strengh and skills everyday. It is hard to be in the hospital this long for both us.  Be with us for the next few days. Stregthen our resolve to make the most of these therapies. Paint joy across our hearts in the excitement in looking forward to being finally home. In your name we ask it.  Amen

March 30, 2017: day +130

Doug's PT Anna, and friend Will

Today I was scheduled to spend the day at the Elks to learn all of Doug's programs and to prepare  for his coming home.  Driving into Boise this morning was crazy.  The snow was blowing sideways. Water was pooling in the yards and streets from the earlier rain.  Cares were hydroplaning. It was a little scary.  It took me at least 10 minutes longer to get to the Elks.

When I arrived at the Elks, I found out that the schedule had been changed.  He had PT early and they were in the middle of getting ready for Doug's shower.  It took 3 people to get Doug out of bed, into his shower chair and into the shower.  This set-me off.  I asked, how they could expect me to go home and do all this on my own.  The CNA said to me that I should fight this.  She said it is too much for me and she has experience in home health doing these activities by herself.   After the shower, I practiced with the OT and team putting Doug in the Hoyer and lifting him into bed and into the wheelchair. I asked the OT to first model doing this by herself.  Since I had only watched teams do it.  She said she had not actually done it either.  We both laughed.  Everyone is reliant on the CNAs doing this work.  They are the real experts.

We learned that the team was having their staffing to review patient cases just before lunch.  The OT had shared with us that she had recommended in her notes that we stay another week.  I thanked her for listening to us and offering support.  Then just before lunch she popped in and told us that the team had decided to recommend Doug stay another week. His new discharge date will be April 5.  I was very pleased and very happy.  Doug was very disappointed.  He is so ready to go home.  I hope that he will acquire more skills this week and that we can find ways to celebrate his accomplishments and do some things to make the time go faster. Hopefully waiting a week, we both will be safer and Doug will advance with the additional hours of therapy.

After lunch our friends Sherri and Will joined us.  Will has offered to help Doug with his OT and PT when he gets home.  He came today to learn all the programs with me.  It was wonderful to have their support and to have another person learning the programs with us. It just seems more accomplishable to take on all the responsibilities of Doug coming  home with the support of friends, our new team.

This morning I woke up with a new vision of how to schedule Home Health.  Our help will include CNA's that will help with bathing, OT/PT and nursing, along with hiring personal care for getting Doug up in the morning and Will's support for OT/PT.  The transition coordinator joined us this afternoon and let me know that the Home Health at St. Luke's won't be able to provide this service because they are not covered under our insurance. This is a disappointment because I had already met with them.  I had to select another company and start this process over again.  I hope to get all the details worked out tommorow.

We end this day, thankful, that our prayers were answered for more time at the Elk's to heal.

God of Mercy, thank you for listening to our prayers.  Thank you for opening the hearts of our therapists, to support us in getting more time for Doug.  Thank you for the progress that Doug is making.  We are so thankful that he can sit on the edge of the bed.  This is such a big step.  It is awesome. Be with us in the next few days as we continue to prepare for Doug's homecoming. We pray that you will strengthen him and help him to stand and  to walk. We pray that he will be able to transfer from his wheelchair to the car, so that he might ride in our car to travel home and to go on outings.  In your name we ask it.  Amen.

March 29, 2017: Day +129

Today was disappointing. We had our family conference at 11:00.  Their idea of the conference is to report to me the skills Doug currently has.  The reason I called the conference was to ask each of the therapists if they believe that Doug will continue to make the progress he has been making with the 15 to 20 hours of week of therapy with only 4-6 hours of home therapy and no equipment.  As you can imagine that question never really got answered.  The answer was that everyone has to leave. Doug has stayed longer than most.  He will progress, but it will take a long time. The expectation is for me to provide total care and continue the therapies with Doug as well as take care of everything at home and work. In the patient handbook it says that the patient will be discharged once the patient is no longer progressing. The transition coordinator and the therapists did not seem to know this was in the patient handbook.

Tomorrow the team is having a meeting and will make the final decision on the discharge date.  I called and talked to one of the doctors today about my concerns since none of them could be at the family meeting.  Doug was suppose to start a bowel program the last time we met.  That has never been implemented.  The doctor checked on it for me and said that an order had been written for March 9. The nurses did not seem to know it was there because they kept telling me there was no order.  They started the program today after the meeting.  I think it is too late to make a difference by Friday.  We will see. I also told the doctor I was still concerned that Doug cannot stand and pivot.  He needs the Hoyer. And he cannot ride in the car because I can't get him in and out of the car.  He understoood my concern, but I don't know how this will translate at their staff meeting tomorrow.

Tonight I need to decide if I want to file an appeal process for his discharge.  I don't think it is right to discharge him with the progress he is making to a lower level of support and with the expectation that I will care for him or provide private care.  What has our health care system come to?  Why do I constantly have to advocate for his needs?  Shouldn't the health care worker be the one to lead the charge?  I am very disturbed by what we have experienced.  Sadly, Doug is tired and wants to come home.  I don't blame him.  But I really don't think it will be in his best interst or mine right now.  That being said we will see what tomorrow brings.

God of Light, driving home tonight in the darkness and rain, it reminded me of the dark snowy winter nights that have been a part of our journey since December. We have been blessed by a few who have journey with us in the health care system who had a strong vision of Doug's continued progress and his restoration to health.  My prayer tonight is to find therapist that will champion Doug to wellness. Therapists who will cheer us both on.  Therapists who are in for the long game and not the short sprint. God of Light, shine on our path,  so that we may make clear decisions that will expedite Doug's recovery.  In your name we ask it.  Amen

March 28, 2017: Day +128

Deer ourside of St. Luke"s

Two nights ago when I came out of the Elks, it was about 10:00 p.m.  It was very quiet and dark and there was no one around.  To have the deer come out of the neighborhood and crossing the sidewalk was mystifing.  They seem so out of place. That night I had left the hospital very concerned for Doug's readiness to come home.  I felt anxious.  And then out of the darkness came the deer. With being captivated by them I felt my body quiet and my spirit nurtured. A little unlike me I decided that I would do a little internet search of the symbolism of the deer and this is what I found.

"We are also reminded that we cannot push towards change in others, rather we gently nudge them in the right direction with love and understanding. Lead by doing and showing the way."  (http://www.spirit-animals.com/deer)

I needed this reminder.  I had been pushing Doug to consider the difficulty of coming home too soon for both of us.  I had been pushing him to remember our goal for hiim to walk. Additionally, I was preparing  for battle with the therapy team to keep him longer.  This symbol, helped me to remenber that people are much more likely to join our vision with love and understanding.  I will reset, and approach the next few days differently. My own spirit will be more restful with this approach.

Doug's OT came to our house today to make recommendations for his needs.  I know that she really wants to help.  I think coming today helped her to see that we are prepared.  We moved 2 years ago to a house that could meet Doug's physcial needs with limited mobility difficulties.  There are still a few things that may need to be changed if Doug does not regain the same level of mobility.  I have decided to wait to make those changes.  My daughter Angie took the bedroom door and frame out to allow more room for Doug to get into the bedroom and to bring the Hoyer Lift in.  We have the new bed with the adaptable mattress.  Also we have a wheelchair that will allow Doug to lay back and take preasure off his bottom.  He has a recliner that is electric and will allow him to lay back and help him to stand.  He can come into the office to use the computer, the room has double doors. We may have to create a roll-in shower.  But instead of spending the money, we are going to wait to see how Doug progresses.  We have a walk-in shower in the master bedroom that will work if he can stand and step into the shower.

Now for the great news.  Doug took a few steps on his own today using the parallel bars! He was so pleased and I am very excited for him.  This is a big step forward. Walking was the moment we have been waiting for these past months. The feeling was like the first day that he fed himself.  We keep moving forward!

And so we pray.

God of Promise, we give you thanks for your presense in our lives.  Seeing the deer was a reminder of the beauty of creation and the assurance that life is bigger than our current worries. The deer was a reminder to stop, breath deeply and to be gentle.  It was a reminder to trust. We give you thanks and praise for Doug walking.  We have waited for these few steps.  These steps remind us to continue to hope and to believe that all things are possible, trusting in your goodness, as we continue this journey to wellness and healing.  Thank you for this day.  Amen

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

March 26, 2017: Day +126

Today it was wonderful to have Scotti attend church with my sister Kate and I.  Scotti and I began our friendship in the church at Trinity in Pocatello.  We both love music and sang together in the church there.  Scotti plays guitar, oboe, and some piano.  She is the musician.  I always enjoy her musical talents. It was reallly great to worship together.

After church Scotti and I went to see Doug.  When we arrived Fr. Dave was just getting ready to leave. He brought Doug communion and they had time to visit.  I am glad they had some time alone together and it was so good of Fr. Dave to be so faithful in bringing him communion.

While Doug was in physical therapy Scotti and I ran over to get some lunch at Whole Foods.  When we came back our friend Harry was visiting with Doug.  That was such a pleasant surprise!  Scotti had to get on the road and so we said our good byes.  Harry graced us with staying a little longer.  It is so nice to have Harry and Cory in town for a few days.

Unexpected deer as I was leaving the Elks tonight.

As the day came to an end, Doug and I talked a little about him coming home on Friday.  Scotti and I had been talking about it.  She is worried for me, wondering how I will care for him when the PT and other staff will not transfer him or get him into a sit or stand on their own.  I am worried with the limited amount of therapy that will be offered.  He will only get between 4 and 6 hours a week.  Now he is getting between 15 and 23 hours weekly.  He has been making continual progress.  I am concerned that he will spend most of his time sitting and that he will not continue to progress or if he does it will be very slowly.  Doug just wants to come home.  It is hard for him to see that it may not be in his best interest.  I have some concerns for me too. I will only be able to afford to get help for Doug while I'm at work.    It is hard to know how hard it will be on me over time if Doug does not continue to make progress.

Tomorrow I will be setting up a meeting with the transition coordinator and hopefully the doctor to talk through some of my concerns.  I will also be contacting some agencies to see about hiring nursing care for Doug.  Another busy day as we look toward transition.  And so we pray...

As the deer longs for running water, so longs my soul for thee. As we travel through this time of Lent, we are being called to sustain our faith in your goodness, in the midst of deep challenges.  We are called to see you in our troubles and in our joys. We are called to stay on the path of healing.  Sometimes that path becomes less clear or branches in unexpected ways.  Help us to find the clear path that will lead us to wholeness and healing.  Help to find ways to support each other and find the path together.  Open the hearts and ears of all of our health care workers so that they may help us to make good decisions that will assure that Doug will walk and that I will remain healthy so that I may continue to care for him.  In your name we ask it.  Amen

March 25, 2017: Day +25

It has been so nice having Scotti here this weekend.  It is nice to have someone else in the house and someone to share this journey we are on.  When I awoke this morning I called Doug to check on him and to find out what his schedule was for the day.  Since it is Saturday he had only one therapy scheduled at 1:00.  But he encouraged me to spend time with Scotti today and enjoy some relaxing time with my friend.  He was doing fine and looking forward to getting some rest today.

Scotti helped me today test some of the equipment that I had gotten for Doug.  We played some with the new Hoyer lift to see how it could be moved around the house and practiced using it. I ordered a new bedspread for our new bed. And spent some time browsing the Internet reviewing local companies to hire a personal care provider for Doug. I appreciated having her here for her company and moral support for this new journey.   We also enjoyed some time sipping coffee and visiting. It was nice to have a Saturday morning at home.

We went to breakfast at about noon at the new Griddle restaurant in Nampa.  Scotti and I have a long history of eating crepes together and found raspberry crepes on the menu.  We delighted in continuing a long tradition of eating crepes together on a Saturday morning.  And it turns out that the co-owner of the Griddle, the wife, has MS  All the staff had on orange MS shirts.  They are fundraising for the MS Society.  Last year they raised $26,000.  Pretty impressive.  We were gratified to be having breakfast in a restaurant that is supporting MS.

Then we went to Home Depot.  Scottie helped me to exchange the shower head I had purchased the day before and pick out new ones today.  I had forgotten that we have brushed nickle in the bathroom instead of stainless steel  While there, I met a woman I had worked with in the Nampa School District 15 years ago.  She has been working at the Home Depote for the past 14 years.  It was nice to catch-up with her and she helped us to pick out some new shower heads.

Scotti and I have spiritual journeyed for many years together.  We did a pilgrimage to Rome last year together.  We both like movies and she suggested we go to see The Shack together.  I had read the book and thought it was a great idea.  So off we went to the movie.  We both enjoyed it and spent the rest of the day talking about it and what it meant.  That was fun.

We promised Doug we would pick-up Mexican food for dinner and so we did.  We took it to Doug and spent the rest of the evening eating and visiting with him.  It is really fun to be with old friends.  We have so much history together and have shared so much of each others lives.  I am so grateful she came for the weekend and that Doug gave me the space to have time with her.

Angie came over while we were gone and took the bedroom door and trim off to give Doug more room to manuver a wheelchair into our bedroom. I am grateful for that help.  She also brought over her dog Cody and cat Nuca.  They are going on a vacation to southern Utah for spring break and need me to take care of them.  I am thankful to have pets in the house again.  Poor Cody is confused though, not having his friend Stryder here to be with.  I know exactly how he feels.  I feel that way too.  Stryder has been gone a week and I sure miss him.

It is only 6 days now until Doug comes home.  And so we pray:

Holy God, the Great I Am, I Was, and I Will Be, we thank you for your presence in our lives,  and for your continual calling of us into relationship with you.  We thank you for friends who travel with us, helping us to discern that calling.  We thank you for the joy we feel in the sharing of your spirit.  As the day comes closer for Doug's homecoming, be with us, so that we might be prepared for a successful transition. And Holy God, we ask you to be with Doug.  Make his legs strong so that he may walk and give him skills to help him to care for his own needs so that he might be more and more independent, so to enrich his life and that he might serve you.  In your name we ask it.  Amen

March 24, 2017: Day +124

As I am writing this blog I wish I had taken some pictures today.  I am not very good at capturing some moments.  Today was a very full day.  I awoke early this morning with a call from Doug.  He was letting me know his therapy schedule for the day and just wanted to hear my voice.  I am so glad that he can call me now and talk about his daily schedule.  It seems so normal and reminds me of how far he has come. It is interesting how you can begin to appreciate such simple things in life.

Today before leaving the house I took the time to learn how Doug's new equipment works, found the batteries for each new device and began charging everything.  I also tried to find a space for everything.  In order to allow Doug to maneuver his new chair I rearranged some of our living room furniture to provide more space for the wheelchair.  I also took some time to do some laundry and change sheets in our guest room. My friend Scotti called yesterday and said she could come over to spend the weekend with us.  I was delighted of course, but thought I had better work on the guest room since I have not given it any attention since Christmas.

I picked-up a scone and latte for Doug and I and headed for Boise.  When I arrived at the Elks Doug was out front with his recreational therapist enjoying some fresh air.  It was good to see him outside.
We went back inside because Doug needed to have some blood drawn.  They had tired to draw some blood earlier, but were not able to get a vein.  He was not looking forward to having them try again.

My friend Bev and daughter Angie met me at the Elks and we went to Idaho City to enjoy an afternoon of soaking in the hot pools.  It was so relaxing to sit in the warm water with the cool rain coming down on top of us.  All the stress in our bodies quickly went away in the tranquil atmosphere of the mountains, soft rain and low clouds.  It was a lovely afternoon.

On our way back to the hospital my dear friend Scotti called and said she had arrived.  I met her back at the Elk's hospital.  We sat and visited with Doug, watched a TV show, Grimm, that Doug and I like and then went and got some tacos for all of us for dinner.  Doug was having a craving for tacos.  By 10:00 it was time for bed and Scotti and I headed for home.  Having not been together since our trip to Italy last year, we had a lot to catch-up on.  And so we have stayed up late talking.  I am so glad she will be able to stay until Sunday.

Let us pray,

God of Love,  we thank you so much for the beauty of friendship and the gift of a daughter.  Sharing life's journey with those we love makes special moments sweeter and difficult moments more bearable. With each step we take the path grows more visible when we journey together into the future.  The future is unknown and unknowable but the companionship of those we love make difficulties an adventure and quiet moments places of peace.  We give thanks dear God, for setting our feet on the pilgrims path with fellow perigrinos to share our ever unfolding story.  Amen





 

March 23, 2017: Day +123

Today was really the beginning of my countdown to get everything ready for Doug to come home next Friday.  I started the day with a visit to my othopedic surgeon for a follow-up on my knee.  I complained to him that my knee is still popping, grinding and locking.  He said well yeah, you have arthritis in that knee and it can't move smoothly.  He let me know that they can do an injection that will provide more cushioning in the knee.  It works well for lots of people.  I decided I wanted to wait a couple of months to see if my knee improves more without it.

I then made a visit to Home Depot and found an adjustable shower head that can be hand-held.  Now I just need to find someone to install it!

Then I went out to the Knights of Columbus to pick up the electric wheelchair.  This is my second trip out there.  When I am there I feel incredibly grateful for their help and think what a wonderful idea it is to have a place where people can donate medical equipment they no longer use and then give it to others who may need it.  Medical equipment is so expensive.  I looked up on the internet the wheelchair I am getting for Doug .  The original list price was $27,000 which seems just crazy!  We found when we they got it out for me, that two of the wheels need to be replaced.  Tomorrow I will be ordering new tires. The good news is that the batteries worked and we were able to load it on my lift to take home.

Then I spent time trying to find a Home Health Company.  I was hoping that Doug could get help with showering 3 times a week and occupational therapy and then get physical therapy at home.  But that is not how things work.  I learned you have to have all therapies at home or none. He will only get PT and OT 2 to 3 times a week no matter if it is at home or at a rehabilitation facility.  It seems to me he should get therapy where he can make the most progress until he gets to  a maintenance schedule. But no. He is being forced to leave the rehab. hospital because his time is up, even though he has continued to show benefit but still has a long to way to go.  It  seems like it would be more cost saving to to continue intensive therapy. None of this seems logical to me. It is hard to keep fighting a broken system.  It is all about money.

We ended the day on a positive note, setting aside the challenges of the day.  Our friends Harry and Cory are in town from Oregon.  They were so sweet to pick-up dinner for all of us from the Olive Garden. We ate dinner together at a table in the dining room with a view.  It was wonderful to have dinner with friends.  Boy, it has been a really long time since we did that.  Thank you Harry and Cory for such an enjoyable evening!

It is time to pray:

God of Possibilities, as we transition into the next stage of our life we are presented with lots of challenges and much to do to assure a successful transition for Doug and continued progress when he comes home.  Guide our actions and open the doors to services that will lead to healing.  Sustain our faith and our focus as we constantly envision and move toward Doug walking again.  And God, thank you so much for friendship. Dear friends help us to enjoy every moment and to celebrate life. Amen

March 22, 2017: Day +122

I missed posting last night. It was a long week with the illness and loss of Stryder.  By the time I got home around 10:00 p.m. from the hospital I was really exhausted.  I decided I just needed to go to bed.  It was good to sleep.

Today I enjoyed lunch with Ingrid and Sherri who have been such a huge support in raising money for Doug's HSCT and assuring that Doug had companions to keep him company as he has been recoverying. I so appreciate how much they have done for us.

This afternoon Doug's OT called again.  She is still wanting me to order a new commode ($3000) and to get a new Hoyer Lift.  I decided it was time to try out the Hoyer Lift I got from the Knights of Columbus.  This afternoon I brought it in the house and figured out how to use.  The lift is almost brand new.  It comes with an additional battery and a charger.  It is an electric lift and so it does not require any manual work from me.  I think that I was really lucky to get this new quality lift.  I am reassured that it will work for Doug.  The main thing is that I hope that he will have more movement by the time he comes home so that he won't need it.

The next question is the shower chair and commode.  I found a commode at the Knights of Columbus that will slide across the bathtub.  It is not as stable as a large wheelchair.  I will need to practice with my daughter over the weekend (if she let's me :).  I will need to make sure it is safe but I think that it is.

The OT is was still pushing me to spend the night at the Elks.  So that I can learn Doug's programs.  I have told her no.  I am there until 9:30 or 10:00 every night.  I will observe all his programs the last day before he comes homes.  I spend so much time with Doug, I am really not sure what sleeping at the hospital will teach me other than I won't be able to sleep and I have many months to come of taking care of him and I am sure many sleepless nights as he continues to recover. I think I need my rest while I can get it.

Most of these accomodations are not as concerning to me as the level of continual care that Doug will need.  The nice thing is that he can use an electric wheelchair, can use his phone, activate the TV and use his urinal now.  That will give him a lot of independence.  I feel like Doug will need someone with him while I am at work. I suspect he will need that help until June or July.  It is hard to know how he will progress.

For now, and over the next week, I have much to do to arrange for Home Health, rehabilitation and someone to provide home care services. And so we pray:

God of Transformation, so much has happened over the past few months. Doug has passed through near death to new life.  For weeks and days he is being transformed and healed.  We pray for his continued transformation.  We pray that his legs will be made strong, so that he may stand and walk. In your name we ask it.  Amen

March 20, 2017: Day +120

Today we celebrate the first day of spring.  This year in Idaho, spring is surely welcome.  It has been one of the hardest, coldest, snowiest winters in anyone's memory.  For Doug and I the winter is wrapped in Doug's recent illness and Stryder's death.  It has been a difficult winter.  We are surly ready for the transformation of our world, and are assured that spring is coming with signs all around us.  The bulbs are coming up at our house.  The trees have buds on them and the grass and weeds are just starting to grow.  The world around us is starting to change.  We pray with the changing season we will also see some big changes in Doug's motor skills and the healing of our hearts with the loss of Stryder.

Doug is really looking forward to coming home.  Almost daily now he asks me some question about home.  Today he told me that the PT has been working with him on transferring from the bed to the wheelchair.  He asked how high our new bed is, and wondered if he could transfer by himself. He is also thrilled by the idea of sleeping as long as he wants and being able to go to bed when he wants.

However coming home will have lots of challenges.  We anticipate that Doug will be home on March 30th or 31st.  I will need help to care for him.  And so I need to get all the support systems in place before he comes home.  And so I have a lot to do in the next 10 days. If anyone knows of someone who can care for him while I work please let me know.  We most likely need someone with CNA skills.  If you know of a great Home Health Agency, I would love to hear your recommendations too. 

And so we pray...

God of the Changing Seasons, God of Transformation, God of healing, be with us during the chances and changes of this life. As the color comes back into our world, bring color into our hearts and souls. Brighten all the dark places and guide us to new life.  We pray we will find the support we need for Doug to continue to improve and be restored and given new life.  In your name we ask it.  Amen

March 19, 2017: Day +119

Today we celebrate 4 months since Doug had his stem cell transplant.  We are still praying that those stem cells are working appropriately and have no memory of M.S.  It is too early to tell with all of the complications that Doug had from being on the ventilator.  Some good things I see is that Doug seems less fatigued.  He seems more alert, less M.S. brain fog.  And we are so grateful that he has been able to avoid getting sick since he left the ICU.  We don't have to be as careful with visitors.  It is not necessary to wear clean clothes. The important thing for the next couple of months is for him not to be around sick people.

This morning, I bought lattes and scones and headed to Boise. It was very strange waking up without our dog Stryder.  I was eager to have the day with Doug, to mourn the loss of our dog boy together. For years Doug insisted on pretty much scheduling everything around Stryder.  He was very protective of him. I guess we both were.  So we spent the day crying, remembering and wondering what life will be like without him.

Doug had a new nurse with him today.  When she was giving Doug his medication, she suddenly had a funny look on her face and asked if Doug had just moved his foot.  Doug told her yes.  She said I thought the records said you could not move your feet or legs.  I guess the records had not been updated! Today Doug was able to pull both knees up while laying down.  He has not done that before. He can kick his legs up when sitting.  He is using both hands to do things.  The left still much weaker than the right.  And tonight, he sent his first text to son Dan.  He continues to make regular progress. He is improving all the time.

Late this afternoon I served at our friend's ordination to the diaconate.  It was a wonderful occasion and such a blessing to welcome Bev as the newest Deacon in the Diocese of Idaho.  Such a special day.  I was able to see lots of old friends.

Life is always funny like that. In the midst of great mourning or sadness, there are new joys and celebrations. Remaining open to all of life is such a dance.  A part of me wants to curl under the covers and let life go by for a while. The other part knows to step out and let the beauty that is life swell up and whisk us away.  And so we pray...

Lord of the Dance,  there are times, I would really rather sit this one out, but then the music starts and you hold out your hand to come onto the dance floor. Sometimes my heart does not feel like dancing yet your call still beckons.  Be with  me, be with us, as we answer your invitation. Help us to have the courage to keep dancing. Slow the dance so that our hearts may catch-up. And when we are too weak to dance please carry us.  Lord of the Dance, be with Bev as she tests out this dance floor.  Give her courage and confidence to trust in your goodness.  And Lord, be with our Stryder as he enters your Kingdom, responding to your call, to transition from this world to the next.  Amen

March 18, 2017: Day +118

The house is too quiet, things are not right.  The world just shifted.  Stryder, our beloved dog died today. We knew he was old and ill, but we had hoped we would have more time.

Just last night,
he turned to greet me,
Just last night,
He slept beside me,
Just last night
We snuggled before sleep,
Just last night
He softly snored
Just last night,
I told him goodnight,
Just last night,
We had our Stryd.
Just last night.

For the past 16 years we have had a weimaraner in our house.  For the past 11 years we have had Stryder.  He was such a tender, loving 112 pound boy.  He was  all sweetness.  Was he perfect. No, not quite.  I have paper towels on the rack. on the counter, that are slightly chewed .  I have a book beside my bed that he chewed  on.  There is dust on the window sill where he laid his head.  He was not perfect but nearly so.

Now, it feels lonely.  I can't believe he won't be walking in soon.  I can't believe he won't be snoring beside me tonight.  I can't believe he won't be the first one I will greet in the morning.  I can't believe he is gone.

Stryder, thank you for all the love and companionship you gave us.  Thank you for bringing us such happiness and joy.  Thank you for keeping your Dad, Doug company. We love you BaBa.  We will miss you always.

Holy God, be with our dear sweet Stryder as he passes from this life to the next.  We give you thanks for his life with us.  We give thanks for his sweet and gentle spirit.  Be with us as we mourn his loss and comfort us in the days to come.  Amen

March 17, 2017: Day +117

H
Happy St. Patrick's Day.  Usually I plan a big celebration.  This year, I just can't get into it I am sorry to say.  I am too preoccupied.  This morning I spent paying bills and finishing an application for VA assistance for Aid and Attentive Care for Doug.  I met with people at the VA last week and they referred me to a specialist to meet with this week.  After a couple of hours at the VA I learned we would not qualify with our assets and we don't meet the requirements for medical benefits because we make to much money.  The only way we will qualify is if and when we use all of our 401K and other assetts.

Then I went to visit Doug. He was finishing his OT.  His OT still wants to do a home inspection. I said OK but I am not sure what they can tell us.  Interesting she is going to have Norco bring a Hoyer Lift because they cannot use the one in our home I just bought because it is used.  Now I am not sure why we are going to borrow one to use in our home for the inspection ??? but perhaps someone understands.

After visiting Doug I went to the pet hospital again.  Stryder is not eating and very lethargic.  His cardiologist has more medication for him to stop the nausea he may be experiencing an increase his appetite.  My only problem is that he does not want to take the mediation not matter what trick I try.  he is being very stubborn.

Tonight I took Doug dinner.  I had put some corn beef, cabbage and potatoes in the crock pot.  He loved  having a bit of celebration. I also snuck in a Guinness for us to split and toast our beloved St. Patrick. I love St. Patrick and love reflecting on his life and influence on Ireland. I love being half Irish. And to all my Irish friends, who I know don't celebrate St. Patrick's day as much as American, please send me your recommendations for better ways to honor the beloved St. Patrick and next year we will do better!

Tonight we hold up to you precious God, all who are hill, sick or sad.  We pray that you will watch over them and make them whole.  And on this day we pray in the words of St. Patrick...

Christ be with me, Christ within me,
Christ behind me, Christ before me,
Christ beside me, Christ to win me,
Christ to comfort and restore me.
Christ beneath me, Christ above me,
Christ in quiet, Christ in danger,
Christ in hearts of all that love me,
Christ in mouth of friend and stranger.

March 16, 2017: Day +117

My friend Ingrid, said to me last Friday, have you had a good cry, you need a good cry.  Last Friday, I told her that right then I was just mad.  I was so frustrated with the family conference that we had. But today, I could not keep the tears from running down my face. When Stryder and I went to the cardiologist for him, the tears would not stop running.  I love him so much and hate the idea of not having him.  He has been my best buddy for so long. He has kept Doug company all day.  The two of them have always had each other since Doug got M.S.  The tears had probably been building up for a long time, but today the dam broke.  The cardiologist at the pet hospital was wonderful.  He came and sat next to me and told me how he had gone through the same thing with his own dog a few months ago and he was still grieving.  He did an echo cardiogram with Stryder.  It was not good.  Stryder has valves in his heart that are leaking.  His heart is enlarged and not pumping as it should. He has atrial fibrillation.  His heart is beating too fast.  He has medicine for him but is not sure if it will work.  If Stryder responds we might have 6 months or maybe even a year.  He wants me to bring him back in a week.  He also said I could call or email any time. And he told me that he would help to decide when if we would need to put Stryder to sleep. That was a big relief to me.

Today, Stryder is not eating and he is sleeping a lot.  The doctor said he might be nauseous.  He can call in medicine if Stryder does not start eating tomorrow.  I have noticed that he is coughing less today.  His respiration is much better. He has been able to walk and has used the doggy door.  Right now he is laying next to me in his bed, just like he does every night.  I am going to enjoy it. He is such a faithful and loving companion.

When I was at the pet hospital a poem came to me that I have not thought of for year
I am thankful every day I live,
For the warmth and kindness that you give.
And I am thankful that in God's design
He thought to make you mine all mine.

Thank you Stryder for your life with us.

After leaving the doctor, I went to see Doug to give him an update. Of course he has been so worried. He too was grateful that today, we did not need to say goodbye.  We have a little more time.

This afternoon, the new bed was delivered.  It will be so much better for Doug.  I think he will really like it.  It is adaptable. The head and feet can be raised up and down. He will be able to sit up in bed

Then I went out to the Knights of Columbus. It was amazing to see all the equipment they have collected and that they give away. I was able to get a Hoyer Lift to pick Doug up to get him in and out of bed, wheelchair and his lift chair.  I also got a shower chair, commode and selected an electric wheel chair that I will be able to pick-up next week.  It was so touching to have these items just given to us.  It saved us thousands of dollars. And maybe someday we will be able to give them back to benefit someone else.

I called Doug on the way home to let him know what I was able to get. He was glad.  He told me that the hospital team had there weekly meeting and that his new date for leaving will be March 30th. The doctor must have been able to get the insurance to agree to extend the time another week.  I was grateful.  And then Doug told me that the team would like me to come down and spend a couple of nights with him at the hospital. I said "What"???? And then I said no.  I have a sick dog and cannot see any reason why I would spend the night.  I spend hours and hours at the hospital and don't need to sleep there too. I have no idea what they are thinking.

Then the OT called and asked if I had seen the picture of the shower chair she had selected.  I told her that I had but that it won't work with our shower.  I told her I was getting a shower chair and she told me that she would need to see it.  I told her that I have been accommodating people for 35 years and that I know Doug and our home and that I can select the right chair.  Then she told me that she wanted to come out to our house next week to evaluate it.  I said that was fine, but that we bought our house last year with the thought of being prepared and assured her we can meet his needs. My bigger worry, is having him come home and needing constant care and not being able to move on his own. She said you will have a Hoyer.  I said it takes 2 people in the hospital and it is a lot for one person 7 days a week.  And most importantly I want Doug to have intense therapy not just home therapy.  All said, I am just not sure we are on the same page. I know the doctor understood my concerns but I am not sure the therapists do.

It was a hard day.  But when I got to the end of the day, I had to give thanks.  Doug is getting another week of therapy and will have another week to get stronger.  We have Stryder for now.  And we have the equipment we need for Doug to come home. That is a lot. And so we pray:

God of Mystery, my mother always said we should thank you for small favors.  Today I am thankful for small favors. I am thankful for the ministry of the Knights of Columbus. I am thankful that Stryder is here tonight, for having a new bed and the equipment Doug will need.  I am thankful that Doug will have another week of intensive therapies.  We pray that you watch over Stryder and heal his heart.  Be with Doug and I as he continues to heal and as we prepare for his homecoming.  In your name we ask it.  Amen

March 15, 2017: Day +115

As I am writing this tonight, I am laying on the couch, watching our Stryder sleep on his bed.  He has been sound to sleep for over an hour.  The pet hospital called around 4:00 and said that Stryder could come home tonight and then come back tomorrow to see the cardiologist.  The doctor told me that he has atrial fibrillation.  He also has some spots on his liver and something on his spine.  The most pressing issue is his heart.  The other things that he did not mention are the difficulties he is having walking because of his hips and a growth on his eye that needs to be removed along with multiple fatty tumors on his body.  He is thirteen and half years old.  He is an old guy.  Doug and I both love him so much.  It is hard to think of not having him any longer.  I may have to make some tough decisions tomorrow or in the days to come.  It breaks my heart.

Funny, Stryder's symptoms were not much different then Doug's.  It began with coughing, then he had lung problems, followed by atrial fibrillation, then needing Lasik to take the fluid off his body along with an IV for fluid.  I am not sure what is happening, but it is pretty interesting that their symptoms are so similar. And I am left trying to figure out how I am going to physically manage Stryder if he cannot walk and how I will physically manage Doug if he cannot stand or walk.  Stryder may love his dad, but did he have to go this far?

After I picked up Stryder tonight I took him to the hospital.  We had the nurses help Doug into his wheel chair so that he could come out to the van and see Stryder.  I wanted him to be able to see him at least one last time not knowing what the night or tomorrow may bring.

Of course we are both very sad. It has been a tough few months on all of us.  All of our hearts have been breaking. We pray for both Doug and Stryder that they both may be healed and that they both will walk.  And prayers for me that my knee will continue to heal so that I can support both of them.

Most merciful God, be with Stryder this night.  We pray that his heart will be healed so that we might have a little more time.  We are not ready to tell him goodbye yet.  We pray for Doug, that his legs will be made strong so that he may walk  and so that he may come home.  We pray for continued healing of my knee, that I might care for each of them. Strengthen our trust in you and remind us in
our worries and fears that you are with us always.  Amen

March 14, 2017: Day +114

Today was a very full day for me and so this post will be pretty short.  I worked today and they went to our school board meeting. It was a big day in our school district because we had a school bond and a levy up for vote today. So let me start with some good news.  We just learned that both the bond and the levy passed.  We are all so thrilled and excited.  We now will have the funds we need to build schoools, update and do some needed repairs.  The levy will allow us to purchase some badly needed curriculum and maintain our staff levels.  This is so exciting and a great relief.  We have work to do now....good work!

On a more unhappy note, our beloved dog Stryder has had a cough the past few days that I have been very concerned about.  I made an appointment yesterday but could not get in to the vet until this afternoon.  She referred us to a specialist because she said Styder's heart sounded like a washing machine.  She was concerned there might be a tumor putting preassure on his heart. Well, when I got home tonight, Stryder started breathing very heavily and coughing.  I decided that I should probably get him to the vet tonight.  He was not able to get up and he is a 112 pound dog.  My sister Kate came over and helped me drag him to the car on his blanket and get him into the car.  The emergency vet decided she wanted to keep him over night to see the internal medicine and cardiac doctors.  She wal wanted to start an IV.  It was very difficult to leave him in the Vet ICU unit.  I have spent way to much time in ICU units.

I am feeling a little like Job here.  We could really use some good news tomorrow.  And so we pray:

Holy most merciful God, we give thanks for all that turned out to vote and who voted to support our schools and to support our children.  We give thanks for all the people who worked so hard to share information on the needs of students in our district and worked to increase our resources and to build new schools.  Be with our Stryder tonight. Give him peace.  We pray that the doctors will find the cause of his illness and that he will be restored to health.  In your name we ask it.  Amen

March 13, 2017: Day +113

Spring is about to be sprung here.  The weather here has been very plesant these past few days.  After the worst winter in anyone's recent memory the warmth and sunshine feels great. Notice Doug has his shades on and no jacket after a stroll outside. He is having a problem keeping his feet on the small foot rest of his chair and so his nurse tucked a sheet around his legs to help keep them in place. It worked and that is all the help he needed.

Today, the Physical Therapist arranged for a vendor to bring over a wheelchair for Doug to try out. I was a little surprised by this after our family meeting last week. I don't want to buy a wheelchair because our portion is very expensive.  Our cost will be around $2000.  The insurance company will not buy to many wheelchairs in a person's life. And so you want to make sure you get it right if you order one. I found a chair at Knights of Columbus that will work if it seems like Doug will need a chair for a period of time when he gets home.  I must say though we are keeping the goal of Doug walking front and center.  He has not gone through all this for nothing. We hope the bigger chair will only be transitional if he needs it at all.  The nice part of Knights of Columbus is that they will give us the chair free and we only need to buy new batteries which cost around $200.   So we shall see how all this goes....

I want to thank Jerry and Ingrid.  They surprised us with the sweetest card with a check to help us with all the additional costs that are coming. Thank you so much Jerry and Ingrid!

With grateful hearts for progress and support we pray:

Holy Life Giving God, we thank you for warm weather and blue skys.  We thank you for long days and sunshine.  As we travel towards Easter, guide our thinking and guide our practices, so that we will be may be transformed and renewed. Amen

March 12, 2017: Day 112

On Friday Doug had been at the Elks 3 weeks. This is his fourth weekend here.  The first 2 weekends he had no therapies.  Last week he had one hour of occupational therapy.  This weekend he had  physical therapy yesterday and occupational and physical therapy today.  At the end of last week they had increased his therapies from 3 hours to 4 hours a day. They are pushing him further and while he is tired he is handling it well.  Even though he is so tired at the end of the day he keeps trying.

I have included two pictures of Doug on the bike today.  This is a very cool bike.  He is hooked up to electrodes that are attached to the bike.  The therapist sets the speed and resistance level then Doug petals.  When he starts to get tired the electrodes stimulate his muscle to engage it. And  when he gets tired the bike does more of the work for him.  The therapists are able to monitor his data day after day to see the percentage of support that he needs from the bike. He rode the bike for 25 minutes today.  It is very exciting to see him using his legs with a reciprical movement.  The bike will definately help his legs to get stronger and to help him develop the movement he needs in order to walk.

You will also notice there is a screen on the bike.  He has an avatar.  He can imagine himself riding through the hills, towns etc.  I am not sure Doug is too excited about this, but it is kinda fun.

There was another big first today.  The physical therapist helped to get Doug into his own small wheelchair. They allowed us to go outside for a walk.  We had our dog Stryder in the car and so we were able to take Stryder for a walk.  It was wonderful that Doug was able to sit-up in his own wheelchair and drive it himself.  He loved getting outside and getting some fresh air.  He loved being able to drive himself and not be dependent on others. And of course he loved being with Stryder. It was nice to have another taste of normal.

We enjoyed the company of Gina this afternoon.  She had not seen Doug for a while and so it was nice to share his progress with her.  Fr. Dave brought us communion.  It is always wonderful to have time with him. His daughter Rachel, Doug's Goddaughter, had her first baby on Friday.  We are all so delighted to welcome Charlette Ann.  Fr. Dave, shared all his baby pictures with us and we were filled with ahh and love for this new little life.

Day by day, moment by moment, Doug is progressing and we give thanks.

God of Promise, we give thanks for the steady day by day progress Doug is making.  We give thanks for your presence in our lives manifested in those around us. Today we are so thankful for the love and support of friendsor; for Ingrid's willingness to continue to organize companions for Doug as well as she and Jerry's continuous support.  We give thanks for being given the opportunity to share this journey with a community of people who are continuously joining us in prayer for healing and wholeness.  God of Promise, we ask that you will continue to heal Doug's body and restore him to health.  Be with him when discouraged or challenged by the hard work that is required of him.  And as we begin this new week, be with us as we seek the resources Doug will need to heal and to come home.  In your name we ask it.  Amen.

March 11, 2017: Day +111

Daughter Angie with Grandson Cole and Foster Grandson Jordan

Today was a restorative day.  I began the day by helping a friend of mine prepare for her ordination next week.  It was so delightful to share her anticipation and excitement as we practiced for her role as a deacon in the Episcopal Church.  She will be ordained next week in Nampa.  She will be a blessing to many.

I then went into Boise to be with Doug.  He was very nervous when I left him last night.  They were taking out his catheter this morning.  There was much concern if his bladder would work appropriately after having a catheter for 3 months.  I figured he would need encouragement and moral support.  But again, our fears were relieved, because Doug's bladder is working just fine. As of right now, there is no need to put the catheter back in. We celebrated with a latte and a scone.  

Angie, invited me to meet her, Cole and their new foster son at Morrison-Knudsen Nature Center.  I have so missed having time with my grandson.  With Doug doing well, beautiful weather, my knee so much improved, I was delighted to meet them. It was great to be outside, watching fish, birds, squirrels and the owls.  It was so nice to have some normal time, in a beautiful place with people I love.

Later we picked up Tom and went back to the hospital to visit.  It was so nice for Doug to see everyone and to meet our new foster grandson.  It just felt good to have all of us together.

Doug worked with a physical therapist this afternoon that contracts with St. Luke's. She had worked with Doug at Vibra.  It was great for her to see the progress that Doug has made.  She got him into a standing frame and worked on strengthening his legs. And then she helped Doug into a stand to transfer to his small electric wheelchair that I had brought from home. Doug was able to take his chair into the hallway by himself.  He did just fine controlling the joystick and sitting in his chair with no additional supports. He has come so far.  He may not need the wheelchair  that the team was pushing me towards on Wednesday.

All this progress confirms for me that we don't know where Doug will be in 2 to 3 weeks.  He is certainly continuing to make good consistent progress.  He is beginning to feel and see the differences in himself.

And so we pray:

God with Us, it is so easy to become discouraged or to loose faith.  Thank you for continued signs of healing and for putting people on our path that share our vision.  Thank you for the gift of time. Thank you for the joy and enthusiasm of children, 

the love family and the blessing of shared ministry. Be with us this week, as Doug continues to heal and we pray that each day brings him closer to walking.  In your name we ask it.  Amen

  

March 10, 2017: Day 110

In my life and maybe because of things happening in my life, I have many opportunities to hear others' stories.  These past few months many people have shared with me the difficulties of trying to live with life threatening diseases and the emotional and financial impact on their families.  It is humbling to hear these stories.  I hope as I write this blog and my focus on Doug and I that I don't sound insensitive to what others are going through.  I started writing this blog to chronicle Doug's progress from sickness with MS to healing. Since that time this blog has gotten bigger. With Doug becoming very ill when we got home, suddenly the focus of the blog turned to surviving. But, there are many survivors out there.  There are people who are not only surviving, but thriving.  My friend Barbara sent me this poster today, and I think it is true. We often don't know how strong we are and what we will be able to do under difficult circumstances.  

The thing I am always sure of is that the only reason that I have not been overwhelmed is by the grace of God.  I have cried, I have been forthright, I have been angry and I have been awed.  I often ride a wave of feelings. But through prayer and the angels that have surrounded us the waves have not been to high or to low. And when I have felt most lost, when the way has been very dark, suddenly the way becomes clear.

Today I was in contact with the Knights of Columbus. They have many of the things the therapists are recommending that we need.  They are holding an electric wheelchair, portable commode, and a Hoyer Lift and sling for us.  Getting these items from the Knights of Columbus will save us thousands of dollars.  I will be able to pick them up next Thursday.  Our new bed that is adaptable will be delivered next Thursday as well.  Norco sent a technician out today to work on Doug's lift chair.  It needs a new remote.  It will be ordered and delivered in a week. I have an appointment with the V.A. to apply for funds to help pay for dependent care next Friday.  Step by step, things are coming together.

Tonight Doug told me that today he felt like he really had made some improvements.  I am always telling Doug about how I see him improving.  Today he told me that he was sitting on his own better today and he was able to ride the bike for 30 minutes.  Both of these are  significant improvements. Tomorrow they are going to try taking out the catheter. This is another big step forward.

I will continue to focus on healing and wholeness for Doug and I as we pray for healing and wholeness for others.  We are all on the same path.  We all struggle in very similar ways.  Together we will hold one another up and smooth out the path that we all continue to walk.

And so we pray:

God of Mercy, with the many challenges that confront us, often we are not sure we will be able to handle what comes next.  Be with us in our fears.  Remind us of the reserve of strength that resides within us. As we wonder, like the psalmist "How Long", sustain our faith and preserve our hope, that you are with us and go before us in all that we do and in all that comes our way.  Amen.

March 9, 2017: Day +109

Tonight I had something happened that made me count the days again.  It was about 8:00 p.m. and I had just entered the elevator to go down to the car to get a salad that I had intended to eat for dinner. The elevator door was closing and a woman stepped around the corner of the hallway and was heading to the elevator.  I quickly pushed the button to open the door to wait for her.  She thanked me and said I must have realized how exhausted she was.  She told me that her daughter had been in the hospital for 22 days and she had been with her everyday.  He daughter had been on a ventilator like Doug, because of having acute respiratory distress, just like Doug.  I told her I completely understood and told her I was not sure how many days it had been for Doug.  So that is what made me think to count the days again.  We walked to our cars. She told me her daughter is only 38 and she has two kids.  The good news is that she seems to be recovering well. Over the last few days I have heard so many stories from so many people who are struggling with illness and the costs involved with being ill. Just at the time people are dealing with the most difficult challenges in their lives, the cost of health care can be overwhelming and stressful.  Everyone is always told to think positive, meditate and pray.  A person should be calm we are told.  But being sick and having a sick loved one is exhausting and worrying about money in the process quadruples the worry.  You would think that in a country as rich as our ours, that the cost of health care would not be so overwhelming.  But almost everyone I know who had dealt with many days of illness has had to deal with the loss of income from their jobs and their jobs being threatened along with the high costs of health care.

And so today it has bee 127 days since we left for Mexico to begin Doug's stem cell treatment.  It has been 109 days since Doug received his stem cell transplant. It has been 89 days since he went into the hospital. The days are still passing. We are not done yet.

Yesterday several people, from the social worker, to the transition coordinator, to the doctor, gave me suggestions for getting help with the cost of caring for Doug.  The transition coordinator told me that Doug would need 24 hour a day care.  Then later she said I could get help from Home Health.  I guess she does not understand that Home Health will only come out 3 days a week for OT, PT and nursing and only long enough for the therapy.  The doctor told me that I might want to consider getting a financial separation from Doug, so that we won't loose all our resources.  The social work told me that I should apply to the veteran's association to see if they could help with aide and dependent care.

Meantime, the therapists are telling me all the equipment I will need to buy and the renovations that will need to have done to the house for Doug to come home. No one thinks about the impact of all this on us. No one thinks about all the work they have given me to do to prepare.  No one really thinks about the cost.

We have more resources than many, but no enough resources.  We have always had insurance and we have saved and tried to prepare our house anticipating the day it would need to be assessable. And yet we are reminded that more people have to declare bankruptcy because of medical bills than about any other reason.  Do you think that this country needs to work on health care reform? My answer is yes.

While we are counting the days for Doug to come home,  I also have a certain amount of trepidation of whether I will be ready.  Will I be able to care for him? They took some wind out of my sails yesterday.  They instilled some fear.

But driving myself home, in the rain and the dark, I reminded myself that every hospital we have been at so far, has called for me to take on some big fights.  At St. Al's, I had to fight to protect him from infection and to keep the conversations about dying out of Doug's room.  I had to stop them from doing a tracheotomy and a gastric tube. And at Vibra I had to fight them and stop them from doing a tracheotomy and a gastric tube.  The fight right now I think is for them to keep their focus on rehabilitation and not on accommodation.  I can figure out how to accommodate him.  And to keep him here until he has the skills to come home.

How will I care for Doug when he comes home?  I don't know yet.  But I guess I will figure that out. I don't know how many more days I have to figure it out. But I know I will have at least 2 weeks. Let us pray for more miracles in these 2 weeks.

And so we pray:

God of our Days and God of our Nights, as we count these days, help us to see the light and the dark. Help us not to be afraid of the darkness.  God of light, enlighten us and illumine the way.  Give us hope in the darkness.  And Lord be with those who govern our nation.  Open our eyes to see the needs of others.   And in seeing those needs, help us to reach out.  Help us work to create a system that relieves our fears and supports the people of this nation that we might be healthy and confident that the care we need will be there, when we need it, for all us. In your name we ask it.  Amen

March 8, 2017: Day +108

It is time to put my boots back on, strap on my back pack and start up the trail again, for a storm is brewing.  Today we had our family meeting at the Rehabilitation hospital.  I requested it when the discharge date was set and we still did not know what their goals for discharge were.  I tried to be positive about the meeting and not be concerned.  Unfortunately that did not last long.

The first words out of the transition person's mouth was that Doug was going to need 24 hour a day care.  Then the PT preceded to tell me that Doug required maximum assistance to transfer from the bed to the chair and that he would need a new large electric wheelchair.  The OT said that Doug would need an adapter for our bathtub in the guest room with a special chair that Doug can sit in and then slide across the tub for a shower. The dietitian then told us about the diet that I had told them that Doug needed when he entered the facility. She did not seem to know the diet came from us. I was not happy.

Everything was about adapting our home and not about making Doug well.  I told them that we did not come to this facility to learn how to adapt our home we came to get Doug on his feet again for him to be independent.  There is no way that I can care for Doug by myself 24 hours a day. They have a whole team of people that changes every 12 hours. On the way out the social worker told me I had done a good job of standing up to the team and making our needs known.  I felt tired.

Later tonight the doctor came to see us.  He was not able to come to the meeting because he was not available earlier today.  I told him I was disappointed in the meeting.  It seemed that a date is picked to leave instead of goals to be obtained.  I also told him that I thought goals should be established with the family and not developed independently by the therapist.  I still don't know what the goals are I only know what they are working on them.  The doctor agreed with me.  He said he understood. He said he would have to make a case for Doug to stay loonger with the insurance.  He did not know how much time we would get, but he would do his best.  Bottom line he understood why I did not think Doug would be ready to come home until he can sit by himself, stand and pivot to change chairs. The OT would like him to dress himself. That would be great, but I think that will come too as his core gets stronger and he can sit by himself. The doctor will be meeting with the team in the morning and they will be establishing new goals.  He will get back to us on how everything went. Doug is more worried now about not going home.  He does not seem to understand what would be required of me to care for him by myself or the cost of hiring a full-time caregiver.

There were many twist and turns in our uphill climb.  But we have come far enough for one day.  It is time to rest.

Let us pray:

God of Truth and Light, guide our path as we climb this difficult path.  Help us to come to understanding  with our caregivers in finding the right therapies for Doug.  Give us enough time in rehabilitation for Doug to heal and to allow him to become independent.  Give us strength and courage to meet each new day with hope and determination. Encourage us to trust in our goals and in reaching our final destination.  That destination of living fully, walking boldly and serving your people.  Amen

March 7, 2017: Day +108

Deer in the parking lot at the Elk's Rehab

Lay down your map and compass,
and those dog-eared travel guides.
Rest your weary eyes from so much looking,
your tired feet from so much wandering,
your aching heart from so much hoping.

Lay down on the soft green grass
wet with morning dew, and watch as
the tree heavy with pendulous pears
bends her long branches toward you,
offering you perfection in every sweet bite.

Give up the weight of knowing,
for the reverence of quiet attention
and curiosity, for the delight
of juice that runs in generous streams
down your chin.
By,

 Christine Valters Painter

I feel like the last few days on this long journey we have rested.  Rested in the progress Doug has made these past couple months and rested, knowing that he will continue to improve.  We have visited with friends, eaten meals together, participated in therapies, worked and watched T.V.  We have rested in what is.

Our friend Margaret sent us a card with a Starbucks coffee gift card.  She knows we love lattes. On Saturdays and Sundays we will enjoy sipping on a latte and reading the paper together.  So sweet! Our friends Gary and Heidi surprised us with a gift of money inside the sweet card.  They know the overwhelming cost of the medical treatment and were so thoughtful to help us out. Every Tuesday Koji and Doug used to meet for coffee.  Today, Tuesday, Koji showed up with a latte to share over some conversation with Doug and our friend Will.  Ingrid brought us muffins when she came to stay with Doug this afternoon.  We have been spoiled.

Doug had a big day of therapies today too.  He had more than three and half hours of therapy along with meals in the dining room.  He handled it really well with only a short nap.  Tonight, Doug said "Where is my pillow?"  He was sitting up in bed and had no pillow behind his head.  For the first time he reached for a pillow and put it behind his head on his own.  His independence and movement is growing daily.  It is reassuring and wonderful to see this progress.

And as I went to leave tonight, a herd of deer met me in the parking lot.  Such a delightful surprise and peaceful presence to end this day.

And so we pray:

God of Peace, we are thankful for moments of rest on this long camino. We are grateful for the invitation to give up the weight of knowing, for the reverence of quiet attention and curiosity. We give thanks for the company of friends and for the sweet gifts that delight our senses and nurture our souls.  Tomorrow will be soon enough to put our boots back on, and to start up the hill again. Tomorrow will be soon enough for us pick-up our map and reach for our compass.  And so until tomorrow, we just give thanks for the peace of this night.  Amen

March 6, 2017: Day +107

Day by day, Doug has been getting better.  Driving to the hospital from work today, I thought wow, I hardly thought about Doug today.  It was like a normal work day.  I don't feel the constant concern for him while I am away from him.  His health is good.  He has had no medical worries for a while and he feels pretty good.  The only thing is that he is still very limited in his mobility, but that is improving too.  He is able to advocate for himself.  He likes the staff at St. Luke's and feels comfortable there. Comfortable, but still can't wait to come home.

Doug felt like he worked a little harder at therapy today.  Last week he told the PT that he really wanted to walk and was worried he was not going to be strong enough or have the skills he needs to go home.  Since then she has stepped up his exercises.  Today he got on a modified exercise bike. He was able to ride it with his legs moving reciprocally.  This is a big step toward walking. Doug felt pretty good with how well he did. It was good for him to see what he was capable now of doing

He also enjoyed lots of company today.  Lisa and Joanne came to keep him company today.  Our friend Gail dropped by and daughter Angie brought Doug his electric wheelchair.  It weights 50 pounds and the doctor still has not cleared me for lifting more than10 pounds because of the surgery on my knee.  The doctor wants to see if his current small portable wheelchair will be a viable source of mobility for him when he leaves here.

It was a full day, but that is good.  The days go by much faster and are much more enjoyable when Doug has his therapies and people to keep him company.

Let us pray:

God of Wonder, just when we begin to worry and get discouraged, a window opens and we see new possibilities.  We are so thankful for the little improvements.  They fill us with hope and ease our worries.  We pray that each day will bring continued improvement.  And we pray that Doug's legs will soon be strong enough to bare his weight and that he will be able to sit on his own.  In your name we ask it.  Amen