January 12, 2017: Day +54

Today was definitely a better day overall.

Doug's first night was a little rough.  He called for the nurse with his head switch because someone had taken his cover off and he was cold.  He said he had to lay in his bed for more than an hour
before anyone came.  He felt so helpless and it was scary not being able to move or get help.  He needed  a hug and to talk. We talked to the charge nurse about it and they said they would try not to let that happen again.

Then around 10:00 the team made rounds with each department represented.  The charge nurse asked me to participate and update everyone on Doug's history.  It was definitely the short version with everyone standing in the hall outside his room, but it was nice to tell his story, because they had some misunderstandings.  The thinking was that Doug got sick in Mexico with the stem cell transplant and they had missed the fact that he had been intubated for 10 days. They all new Doug has MS, but did not know that his current problems were the result of critical care neurapathy.  So, I had to do a lot of explaining of  our last 70 days.

The staff  have been very thoughtful, kind and competent.  Just the kind we hoped for.  The doctor decided that Doug did not need to be in ICU and they moved him to the medical floor today. I was not surprised by this.  Doug's heart rate, temperature, and blood pressure have been stable since Sunday.  Today he has been alert all day and awake most of the day. This afternoon after getting to his new room he was evaluated by the speech and language pathologist.  They got Doug up to a sit with his legs hanging over the bed.  This was a huge step.  Doug has not sat for weeks.  The PT supported his back and while he was sitting the SLP did a swallow evaluation.  The SLP says Doug can continue with the ice chips and perhaps by next week he might be ready for some food with texture.  The two of them had a great sense of humor and were very helpful and hopeful.  Doug asked if he could be wheeled around the hospital, he wants to get out of the hospital room.  The PT, Liz, said she could make this happen.  Tomorrow they will take him for a ride.

Doug has been able to watch some TV again today.  He was even laughing while watching the Big Bang Theory.  I have not heard him really laugh in weeks.

Tonight as I write this blog I don't have the fear that I might get a phone call that Doug went into distress and might not make it through the night.  This has been our life for the past 3 weeks.  That 3 weeks seems  like forever.  I think we really have turned the corner.  It will take a long time for Doug to recover and I pray he does not catch anything else. I also pray that when this antibiotic ends...nothing else surfaces.

Many of you have asked about visiting. Up and till now we have limited visitors because he is immune compromised and because he has been really weak and tired.   We still have to be very careful.  People may visit him.  He would like that. He yearns to have his life back and friends can help remind him of life.  The only thing is that he could catch anything so easily so before visiting  please:
1. If you have been exposed to illness or have an illness wait until you are sure you are well to visit.
2. Wear clean fresh clothes.  We have the potential to carry germs on our clothes.
3. Upon entering please be sure to sanitize your hands and avoid touching your face.
4. If you are in doubt of whether you have been exposed to something, please wear a mask.There are masks at the hospital.

Thank you so much for helping me keep him well and me well.

Light of the world, a new day is dawning, the day is bright. Thank you for the light of this new day. Thank you for giving us caring, smart professionals. Watch over Doug as he sleeps this night.  Help him to feel safe in this new place.  Help him to feel comfort from those around him.  Fill us with strength as Doug continues step by tiny step to heal. Amen