Day 8, Start of the day

Steve had his third plasmapheresis treatment yesterday afternoon, at about 5pm.  He said it took almost 2 hours, since the line is slow.  They are not sure if the line is slow because of clots or because Steve pushes the needle against the wall of the vein when he moves his head.  Steve has complained for two days of feeling "antsy" and they have given him sedatives.  He wants to move his legs.  Hopefully the therapy/rehabilitation will help.  The therapists hadn't been to see Steve in a few days, so the doctor rewrote orders for them to come.

Terri was home for the weekend and was a huge encourager for Steve and me both.  Steve asked Terri to get a piece of balsa wood from his plane-making stash and fix him a "nose scratcher".
The nurses allowed him to keep it.

I had a momentary panic when the nurse at the morning visit yesterday said that they were going to move Steve to a regular room on Monday.  Steve cannot sit up, walk unassisted, or lift his head off the pillow.  The nurse said that someone would have to stay with Steve 24/7 in the regular room since he could still have respiratory distress and it might take a few minutes for a floor nurse to get to him.  But Dr. Young came right in and said no.  Dr. Young wants Steve to have more "trunkal strength" before he is moved.  Dr. Bajawa and the on-call hemotologist over the weekend both think that Steve will be moved soon.  Praying for Steve to regain muscle strength quickly.  His platelet count, dangerously low at 13,000 a week ago, is now up to 130,000.  Praising God for the increase!

I found a GBS newsletter/support web-site.  http://gbs-cidp.org/newsletters/pdfs/GBSMedNL0910web.pdf
On pages 2 and 3, there was an equation that tried to predict if a person was going to be able to walk unaided in 6 months.  With Steve's age, the fact that he didn't have any diarrhea and where I think he will be in a week (which will be the two week marker of the onset of his symptoms) , his "number" is going to be a 3 or a 4.  Right now he is bed-ridden.  But if this graph can be believed, he should be walking unassisted by the first of July.

Steve always seems to have a smile for me, and I have fed him during the last couple of visits.  I stopped by the church yesterday, just for a few minutes, to see familiar faces, people who were happy to see me, to apologize to friends for missed messages, to re-connect.  It was both wonderful and heart-wrenching.  I know I don't want to burden others.  This recovery is going to take months, not days, and I am finding it difficult to ask for help.  People have their own needs.  Part of my anxiety is that I have NO CLUE what to expect.  Two months in a regular room?  Two days in a room and twenty-one days in rehab then to our home?  Three months in ICU?  The doctors continue to be vague, not to be unhelpful, but because it all depends on Steve.  God help us.

Speaking of God:  When God declares Himself as I AM, you cannot stand in His presence.

We have to fill out forms for short term disability, I need to contact our tax guy about how to estimate taxes for that, go by the cleaners, and put out the recycling.  Terri helped me with the three big things I needed to do over the weekend:  hang the curtains, put the Christmas boxes in the attic, and wash/vacuum my car.  Thanks daughter!

Monday, Day 8, Mid-day edit:  Steve did great today!  He was able to lift both knees!  It was one at a time, but he was able!  And he could lift his left elbow about an inch off of the bed.  (He continues to be very grateful for his stick.)
The breath test before lunch showed that he could breathe-push the test apparatus to 4500, 4000 consistently.  The test container only goes to 5000.  Not even sure what the test is called or what 5000 stands for.