December 14, 2016: Day+ 25

Today when I got to the hospital at 9:00  they had already gotten Doug up and put him in his chair and fed him, what little breakfast he would eat.  He was back in his bed with fresh sheets.  They were prompt when Doug's IV ran out to change it,  without me having to call them. They actively checked on  Doug's personal needs.  It was amazing.  The doctor came to see me.  He was very nice and very thoughtful.  It was a different day.  Obviously my complaints worked because there was a huge difference in his nursing care today.  I am so grateful.

They decided to put a PIC line in so that they can deliver nutrients to Doug. Doug is eating a little however the doctor is still concerned that he is not eating enough.  He is seriously low on nutrients since he went 6 days without really eating.  He is very weak and sleeping most of the day.  Hopefully, with the medication, lower temperature and some nutrients he will begin to perk up some more.

We had a bit of a scare, when trying to the PIC line in they thought they felt a blood clot.  They then needed to do an ultrasound.  I got the radiology report a little while ago and good news, no clots.

I talked to the hospital transition person again today.  I told her the concerns we had of going to a skilled nursing facility.  I also called a Home Health company.  I learned that Home Health will only come in 2 to 3 times a week for a couple hours each time.  The transition person then said there might be another facility that Doug might qualify for that is for people who need a little longer term care.  It is a hospital with skilled staff.  There are 2 facilities in Boise.  One is Southwest Idaho Advanced Care Hospital and the other is Vibra.   I thought I would check these two hospitals out tomorrow.  I am concerned about bringing Doug home as weak as he is with so little services available. If the hospitals don't work out I am thinking about hiring someone to come and help us.   Thank you everyone, who provided me feedback and ideas about resources for getting services for Doug and of the consideration you helped me to think through.

Doug is more alert tonight.  He is watching a little TV and talking a little bit. Baby steps but we are moving in the right direction.  His doctor says that he will be here in the hospital through the end of the week and maybe through the weekend.

As for me,  I went to the orthopedic doctor, Myers Johnson today.  He occassionally went to Grace while we were there.  It was nice to see him.  He ordered an MRI for my knee.  We are now waiting for the insurance approval. I do feel like it is doing better.  The brace has helped a lot.  So we shall see.

It is time to pray.

God of all Faithfulness,  bolster our faith in the midst of challenges.  Sustain our vision of all that is possible.  Remind us of your healing power, when we become fearful or discouraged.  And dear Lord help us to remember the joy we felt at the time of transplant, strengthen our hope and vision to return to wellness and new life. Amen

December 13, 2016: Day 24

It is late on Tuesday night and so this will be a short post.  The good news is that Doug is continuing to improve.  Today when I got to the hospital he was in a chair and had breakfast in front of him.  He was actually drinking some orange juice.  This is the first time since last Thursday that he has been interested in food or taken any nourishment independently.  He then willingly took a few bites of oatmeal.  I brought him his favorite blueberry scones to entice him to eat and he ate a few bites of it as well.  For lunch he ate half of a chicken sandwich and half a piece of pie and for dinner he ate half of a chicken breast and some rice pilaf.  I am thrilled he is eating again.  This is a big step back to regaining his health.

I was pretty frustrated today though.  The nurse had left him in a chair for an hour an half by himself with his food sitting in front of him.  No one had helped him, even though he has not eaten anything since last Thursday and he is too weak to eat on his own.  Then he was not going to give him the humidified oxygen.  He had left it off of  him and Doug had begun coughing again.  This followed by him refusing to retake his blood pressure when I asked him to.  Doug's blood pressure was down to 71/56.  The OT wanted to work with  him and get him into a stand.  He is so weak he cannot stand on his own let alone with that blood pressure.  I ended up having to demand he call the doctor and letting the doctor know what I was not pleased with and also letting the head nurse know.  I let them know my expectations for his care in no uncertain terms.  Low and behold I did get the humidified air, the blood pressure taken and OT and PT for Doug. But whew.....frustrating.  He is in ICU!

A couple more delightful things happened today.  I learned that Dick Halsey at our church is selling handmade wooden pens, for Christmas gifts and donating all the proceeds to Doug's medical care. This was an amazing and delightful surprise.  Then my good friend Jacquie Prather came by the hospital to see us and brought an envelope.  Inside was a Christmas card and money from some dear Parkridge staff that have continued to get together over many years.  These dear ladies donated to Doug's care, instead of giving each other Christmas gifts.  And then my friends Carl and Linda Goodwin came to Nampa to see Doug and took me out for dinner at the Brick.  It was so wonderful to have a couple of hours with these dear friends.

The other thing that happened today is that the doctor and a transition person at the hospital met with me to talk about Doug going to a skilled nursing facility for rehabilitation after he is released from the hospital.  Doug is really not keen on this idea but agreed to it. I am concerned about which facility to choose.  I would love to hear peoples recommendations based on recent experience..  This is another big hurdle facing us.

God of Mercy,  thank you for the goodwill and care of good friends who lighten our burdens and sustain our hope.  Thank you for our dear friends who pray for us daily and journey with us.  They remind us of your goodness and continual presence with us.  Be with Doug as he continues to heal. Strengthen his body, so that he may walk again.  Give him confidence that he will be restored to health.  Fill us with joy at all the small blessings that we receive each day.In your name we ask it, Amen

December 12, 2016: Day 23

These past 5 days have been pretty tough.  We came back from Mexico, thinking we would have a quiet, restful couple of weeks.  We thought both of us would have time to rest and get ready for Christmas.  It was not meant to be.  I thought we had taken every precaution we could take to avoid Doug getting sick.  We had the carpets cleaned and house sterilized  before returning home. We had the car cleaned to be sure it would be safe for Doug.  We bought new dog beds for Stryder.  We sanitized the seat belt, seat and trays on the plane.  Doug wore a mask all the way home from Mexico. But alas, somehow he picked-up something.  The doctors think that he has a virus with a sinus infection.  His body was somewhat septic.  He has been very, very sick with this new immune system.

When I left last night his nurse was very concerned about Doug.  He is a nurse that has been with him since he was admitted.  I really appreciated having him.  He was very honest and very caring.  I thought he would be with us one more night but apparently he got rescheduled. I am disappointed he is not here.  However our new night nurse comes recommended by our friend Bev.  Bev is an instructor in nursing. He was one of her students. She was here visiting tonight when he came in to meet us.  Her recommendation makes me feel better.  We are also loosing one of his day nurses today.  She has been great and we have so appreciated her.  She is very attentive and proactive.  She will be back on Thursday, but hopefully we won't be here then.

Dan left for home this morning and I had a doctor's appointment and so Angie and Tom came and stayed with Doug.  I am not comfortable leaving him alone because he cannot advocate for himself. The staff often ask him questions, that he really can't answer yet.

The good news is that today Doug was more awake and was talking more.  He could pay attention to some conversation and he seemed more aware of what was going on around him. His temperature has been down all day.  His coughing is much reduced.  His blood pressure has been good.  His heart rate is still high, however they are giving him medication to lower his heart rate.  Hopefully that will start to come down.  They got him up and put him in a chair for a while today and he tolerated it pretty well. He has edema now from all the fluids they have been pumping into him and so they are now treating the edema. I got him to eat some lemon meringue pie.  This is the first thing he has eaten since Thursday.  We have been worried that he is not eating or drinking anything and so this was a big hurdle.

Waking up this morning, I was afraid of the direction this was all going.  But coming in today everything looks more hopeful.  All the numbers are going in the right direction.  Doug is more coherent and he was willing to try to drink and to eat something.  I am so glad for these improvements.  I know we will both sleep better tonight

Holy and Life Giving Lord, be with us during this time of darkness, Fill us with hope to sustain in these times of distress.  Guide our thinking, so that we make choices that lead us to wellness and wholeness. Fill us with joy with each step of recovery.  In your name we ask it.  Amen

December 11, 2016:Day =+22

Doug when he was admitted to the hospital

When Dan and I arrived at the hospital this morning we learned that Doug had slept most of the night. We were grateful that he was able to rest..  His body is worn out from all that he has been through in the last month, and being ravaged by this infection and uncontrollable cough.

He has slept most of the day, which is good.  He is still coughing, however it is not continuous.  His temperature has been down most of the day.  His heart rate is still high.  He is refusing to eat or drink. He has started developing some edema and so the doctor took away the IV fluids.  When I was able to meet with the doctor I asked him to return the IV because Doug is not drinking.  I think his throat is sore and often when he swallows he begins coughing.  When I explained to the doctor how dehydrated he had been, he restarted the IV fluids and agreed that it would be best to slowly reduce the amount of fluids he is receiving.

There are lots of concerns and worries.  He has been very sick.  Things do look a little better, but we are not out of the woods yet.  I don't think they really know the source of the infection.  They are giving him very strong antibiotics that should kill about anything he has.. It is also  a worry that he is not eating or drinking.  I pray that tomorrow he will feel better and that his heart rate will be down so that he will feel like eating and drinking again.

Many of you have offered concern for me.  So here is a little update on me.  Tuesday night I twisted my knee when I was trying to get Doug up and off the floor after a fall.  By Friday morning it was really hurting and I decided I needed to walk across the parking lot to Quick Care and get it checked. It was a rough walk with the icy parking lot, but I made it.  They did an x-ray and found nothing is broken. And so they braced it, gave me ibuprofen and recommended I see a specialist next week.  It feels much better with the brace. I am hoping that it is just a sprain and will be better soon.

Dan leaves tomorrow morning.  It has been really nice to have him here.  I wish that Doug could have visited more with him, however he has been really too sick to visit.  He has been good company for me and helpful in trying to interpret and understand what is going on with his Dad. It is nice too, to have his wife Corinne on the end of the phone when we need her.  Corinne is an internal medicine doctor who has been a hospital doctor.  Her expertise and Dan's molecular biology and pharmaceutical background are a Godsend.

We have been blessed in many ways over the years.  We have done things right and done things wrong.  But for some reason we have been blessed with wonderful kids. I thank God that we have adult kids who are smart, caring and intelligent.  They are great people to be with and they make our lives better.  Corinne sent me an early Christmas present. It is a beautiful Celtic quilt that she and our grandsons made together. It will be a great comfort to me. Especially during this challenging time.

Handmade quilt by my daughter-in-law and grandsons

Tonight we pray:

Holy God, be with us this night.  Strengthen our hope and give us peace.  We give you thanks and praise for the caring of our family and friends and for the continued care of health professionals.  We pray that Doug will be healed, and his body be made strong.  Be with all who are caring for him. Help them to find answers to our questions and treatments that will heal Doug's body.  Be with Dan as he travels home tomorrow.  Amen

December 10, 2016: Day+21

Friday was a very long and difficult day.  Earlier in the day I thought we were making some headway. Early in the morning Doug was talking without a lot of coughing.  However by mid morning the cough was back with a vengence and his vitals were all elevated.   His heart rate and blood pressure were both high.  He was running a temperature over 100 most of the day.  The constant coughing was literally wearing him out.

He continues to get IV fluids and antibiotics.  He is receiving respiratory treatments every 4 hours. He is also getting cough medicine.  Dr. Bowman  has been his daytime hospital doctor since Thursday morning. He has been great to work with. Today he was asking me about some of the medications Doug received in Mexico. I told him I had all of his records from Mexico, including all of the test results and a day by day description of the medication and procedures that were done.  He asked if I could bring them in and I said of course.  I had brought them with me the first night, but no one was interested in seeing them at that time.

Yesterday, my daughter asked me if they were humidifying the air.  She found that most helpful for Cole our grandson who was premature and had lots of problems with his lungs. Doug has not had a humidifier.  I asked Dr. Bowman  about humidifying the air and he thought it was a good idea.  He ordered oxygen with moisture.  Immediately Doug's cough diminished and now he is getting some rest. It is making a huge difference

Dan, Doug's son flew in from California last night..  He got here around 9:00 p.m. and will stay until Monday morning.  It has been good to have him here and of course Doug is glad he is here although he is not feeling well enough to
 visit or interact.. Dan has a Ph.D in molecular biology.  I appreciate having him here to help me think through the treatments that might be best for Doug.  It is just good to have him to share the care and concern as well.

The lung specialists thinks that it may take them a couple more days to figure out exactly what is going on.  But I am hoping that we may now have turned the corner for his recovery.  Having the coughing slowed, is allowing him to rest, and this is bringing down his blood pressure and heart rate a little. This calming  of his system, where he is not gasping for air is allowing his body to heal I think.  He really has not slept any substantial amount of time for more that 3 days. So I am praying he can sleep this tonight.

Doug is still in Intensive Care,  step-down unit at St. Alphonses in Nampa. He is being monitored constantly.  I also continuing to communicate with my daughter-in-law, who is an internal medicine doctor.  She has been really helpful in helping to understand the tests he has been given and offering ideas for tests he may need and recommended treatments.  Dr. Bowman has appreciated her thoughts.

Doug, is tired and tired of being sick.  With struggling to breath he is somewhat anxious.  And of course it is hard for me to watch him suffer.  It is worrisome and scary since it is taking so long to figure this out.  Everyone's prayers make this journey easier.  Having Dan here makes it easier. Thank you everyone for your continued concern, prayers and notes.  You all help us keep the faith.

And so we continue to watch, and hope for Doug to respond and recover.

Mighty God, as the sun is setting, and the quiet darkness is settling across the valley, be with us. Quiet Doug's cough, reduce his temperature and give his doctors and caregivers guidance in how best to treat his illness.  And as the darkness of the night is upon us, allow him to fall into a deep and healing sleep.  In your name we ask it. Amen

December 8, 2016: Day +19

My plan was to post, once a week on Saturdays after returning home.  However, things have taken a turn and I want to be sure to document each step of this journey, for us to remember and to document progress, to share our journey with our friends and family, to provide information on HSCT for MSers and to ask for prayers for healing and wholeness.

On Tuesday night Doug became pretty weak.  He fell and it took us over 30 minutes to get him up. He was really tired.  I thought it was related to him still recovering from chemotherapy and the transplant, in additional to our long day of travel on Saturday.  Many people talk about being more tired after returning home. And when Doug gets tired it interferes substantially with his ability to control his muscles, speech and thinking.  Well, with substantial effort I was able to get him into bed after getting him up.

Doug woke up around 5:30 on Wednesday morning and needed to go to the bathroom.  I could tell then he was too weak to get up, but he was very resistant to staying in bed and wanted to get up.  I ended up calling my son-in-law Tom who lives in Star, to come over and help me. I was really thankful to have him come over because I can't lift Doug by myself and it was good to have some moral support.

Doug seemed to rally during the day, was tired, but not exhausted and pretty rational. By 8:00 last night he again was really tired and not able to control his body.  With great effort I was able to get him into bed.  He fell asleep around 10:30 p.m. but woke up at 12:30 a.m.coughing.  He could not stop coughing.  We tried cough drops, hot tea, water, but nothing worked.  I then took his temperature and it was 102.  He was listless and not communicating very well at all.  I called 911, because I could not do anything else and I knew I needed help.  Also, our instructions from the stem cell transplant were to seek help for all temperatures over 100.   There was no way I could get him to the car to take him to the emergency.  The fire engine and ambulance arrived with about 6 men.  They agreed he needed to go to the hospital and transported him.

We were in the emergency room from 1:30 a.m. to 9:00 a.m. this morning.  They took several blood samples and a urine sample, chest x-ray and CT scan.  His heart rate was fast (tachycardia), temperature high (101) he had continuous coughing, and low oxygen levels.  He was also dehydrated. They gave him  3 liters of IV solution, antibiotics, respiratory treatments, and Naproxen to bring his temperature down.  Finally everything began to work about 7:30 a.m. and he began to rest.

They moved him to "step-down" care, which is a step below ICU.  He was doing pretty well, things were stable and so at 11, I went home to feed our dog and to get a couple of hours of sleep.  When I got back at 3:00 everything was right back to where it was when I had called the ambulance.
Apparently it had started back up not long after I left. Luckily, he had a great nurse, Lorriane, who took good care of him and watched over him like a mother.

Finally about 6:00 p.m.tonight all the numbers came back into a more normal range and he was able to get a little sleep.  His heart rate remains a little elevated.  Unfortunately whenever he wakes up, he starts to cough again, but it has not been as bad yet.  We are not sure what the night will bring.

The nurses and doctors have been very nice and helpful.  They are searching for answers and have been genuinely concerned and caring.  You should have seen the looks and expressions when I first told them we had been to Mexico for HSCT.  I could just see some judgment crossing their faces. However, I keep explaining the treatment and the fact that several countries have been doing the treatment for many years and doing something is better than the alternative of doing nothing.

Anyhow, here we go again, or here is just another twist in our pilgrimage of healing.  One thing I learned when I walked the Camino de Santiago de Compostella, is that every time you go down a mountain, there is another mountain staring you down that you have to climb.  Looks like we are climbing another mountain.  But each time we climb, we get stronger and more prepared for the next one.

And so we pray,

O come, O come, Emanuel, be with us and our healing team.  Be with our doctors as they work to understand the underlying infection that Doug has.  Give Doug courage and peace in his present condition.  Give him hope in these challenges; to believe that better things are to come.  And we give thanks to all who have been with us on this journey and who continue to support and pray for us. We give thanks for having a daughter-in-law who is a doctor who can help us to find answers and family who jump into help.  Amen.

December 3, 2016: Day 14

Our day started very early on Saturday as we prepared to come home.  The people in the apartment above us decided to party all night long, with loud music and loud voices.  When we left the apartment at 6:30 in the morning they were still partying.  We heard the other HSCTers talk about loud partying, some had even posted videos on Facebook with the sound of the music from the their neighbors.  We had been spared this until the last night.  Apparently, parties in Mexico are best when they go all night long. :)  Needless to say we did not get much sleep.  The alarm was set for 5:15, but at 5:00 I gave up and decided it was time to shower.

Tony, one of the drivers, picked us up for the airport at 6:30 a.m.  When we got on the van there were already 4 others on the van from group 3. We had previously had the opportunity to visit a few times over the course of the treatment.  Karen and Brad are from Benicia, California. They are about our age.  Brad retired from the Forest Service. He spent a lot of his career in Idaho. Karen graduated from Boise High School. The other couple were from New Jersey.  They are in their 20's. It took us about 45 minuts to get to the airport. We all had lots of luggage. With the help of Tony and an airport employee we got everything to the ticket counter.  Even though there are almost 3 million people who live in the greater Puebla area, the airport is very small. Most people fly in and out of Mexico City.  There are only 4 gates at the airport.  When we flew in on November 4, it was 9:00 p.m. and it was dark.  I was mostly focused on the loss of Doug's wheelchair and trying to figure out how to communicate with limited Spanish.  This time at the airport it was much easier.  We were early and had no waiting in line.  The woman at the counter helped to make sure everything was tagged correctly.  We had plenty of time before flights in each of our stop overs and so we decided we would not check the wheelchair and would not need assistance at the airport.

We were on a very small plane with 2 seats on one side and one seat on the opposite side.  We had a great flight attendant with a great sense of humor.  I asked her about the Houston weather.  She said we might not be able to land.  We may end up in San Antonio.  As we got closer to Houston, the flight got much rougher and the clouds darker.  We were all told to stay seated and buckled in. The flight attendant was also belted in.  I leaned into the isle and looked at her just as one of the doors to a cupboard she had locked dropped open.  She smiled and shrugged her shoulders. I crossed my fingers and we both laughed.  We bumped our way down to a smooth landing in Houston.  We were all relieved!

We had two and half hours before our flight to Denver.  With Doug needing to be very careful to assure he does did eat contaminated or undercooked food it took away the option of having brunch at the airport. We finally decided that we would have a pizza with no vegetables and no meat, at a nice little restaurant. We asked the waitress if the cooks wore gloves and if it could be delivered immediately very hot.  It was a bit of a risk, but we thought we would be pretty safe. They took extra care when they learned of our circumstances.  After our light lunch we went and sat at our gate. After about 40 minutes, I wondered why no one else was there.  I decided I had better check the monitor.  The woman at the United counter had written the gate number for us when I had decided to check Doug's walker so that I would not have to carry it all day. And so I had not paid any attention to the monitors until then.  Good thing I checked, because the airlines had changed gates and terminals.  We took off.  We got to the gate just in time for early boarding.

My granddaughter, Anna had given me a book she enjoyed to read while we were gone. The book is "Behind Enemy Lines".  It is a true story of a Jewish woman in World War II and her family.  I had only read half.  I though I would have more time to read while in Puebla, but I ended up with very ad little uninterrupted.  So now was my time to settle in and Doug took advantage of the quiet time to nap.

We landed in Denver with 3 hours until our next flight.  We wandered around the airport and took the opportunity to do some shopping in a couple of bookstores and specialty item stores.  We stopped in a sports bar and I got a bowl of Chile.  We bought Doug a banana and he had a snack with the additional items I had brought along. After our long layover we finally left Denver at a few minutes before 7:00.

Doug handled the long day very well.  He was able to get some naps in during the flights.   We had been concerned about the day with Doug's limited immune system. We had to sanitize the seats, seat belts and tray tables as we got on each flight.  He had to wear his mask the full day which was not really fun for him.   We sanitized our hands at least a dozen times throughout the day. But in the end it all worked out. I guess we won't know for sure, but hopefully he avoided catching anything.

My daughter Angie and granddaughter Anna met us at the airport along with our dog Stryder.  Anna was waiting at the top of the escalators with a big smile and came running with a hug.  It is good to be home. Angie and Tom cleaned our car so that it was more germ free then it has been for a long time and Anna sanitized again where Doug was going to sit. We loaded all of our stuff into the van and headed home, arriving about 10:00 p.m.  We had been up since 4:00 a.m. MDT with little sleep the night before, interestingly though Doug was not exhausted.  He wanted to come in and hear the news while I got things unloaded.  Usually, he would be so exhausted that he would be hardly functioning and unable to get ready for bed by himself.  This was a sign of some good news in his recovery.

Now as we have come to end of our this first length of the recovery process, I am reflecting back over the 10 years. A whole decade of our lives. Two years ago, I was a spiritual director for a women's camp at Paradise Point located on the beautiful Payette Lake.  Sometime in the year of planning before the retreat, I heard the song "Draw the Circle Wide".  This particular song resonated with me.  For years, our circle of people had gotten smaller and smaller.  As Doug changed more and more, he was able to do much less and the disease had effected his physical abilities and his thinking. After all, MS is scarring on the brain and the death of neurons.  It can be really hard to explain this to others and often people do not know how to respond to him.  Doug and I both have always been extroverted and very active in our community.  Being more withdrawn and limited was difficult. It was hard to see the future. We cut down and shut down more and more. We needed to open up.  We needed healing one way or another. We needed help and we needed to live more fully.  We needed to draw our circle wider. And so "Draw the Circle Wide" became my own theme song.

Here are the lyrics;

“Draw the circle wide, draw the circle wide. No one stands alone, we’ll stand side by side. Draw the circle wide; draw it wider still. Let this be our song! No one stands alone. Standing side by side, draw the circle, draw the circle wide!”

Without drawing the circle wide we would never have made it to Puebla.  So many people have supported us and helped us to raise money to help pay for the treatment.  The continuous support and prayers we received in Puebla made the experience not just a medical treatment, but a healing.  And while in Puebla standing with the others going through HSCT we experienced more love and more healing.

And so in giving thanks and prayers for continued healing we pray:

Holy One, we give thanks for all those in our life who have stood side-by-side with us. We give thanks for those who have held the faith for us when we were discouraged.  We give thanks for the people of faith who drew us in and encircled us.  We give thanks for all the people who have loved us just the way we are. Be with us now, as Doug begins to heal.  Strengthen him when he is discouraged or overwhelmed. Strengthen and support our vision of wholeness and healing.  And in this second week of Advent give us peace in accepting your timeline of healing.  Give us peace in knowing that you are doing better things for us and this world than we can ask for or imagine.   Amen

I will continue to update the blog weekly with news of Doug's continuing treatment and his progress in recovering skills.  Thank you all who have read and traveled with us on this journey.  

We are home, after a very long day yesterday.