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.