February 19, 2005 - John's Status

Yesterday his inflammation markers had not moved and his liver levels were slightly worse - pins and needles

We had him baptized yesterday morning - since we had been talking about it - somehow he got skipped when he was little - someone at AMD had a friend who wanted my job (Director of Training) so I had to leave, get a new job (MASS), move, and settle a new baby - a bit harried.

If they did that today it would be a $40 million dollar lawsuit or higher! But they got away with it in 1982 - I did stay to vest my stock - and they let me - tells you somethings doesn't it? They still owe me for a travel expense - from 1979! Told me I didn't need the money. Nice.

Jerry Sanders has a lot to answer for.

The chaplain who did the baptism is the one John gave the Diablo 2 book (computer game) to so she could read about a game that involved demons and devils - they've had interesting discussions

Chuck and I have mounted 24-hour watch for a couple of days - Pepper flew in from Salt Lake and Ellen from team in training picked her up a the airport

Pepper, the nurse, Chuck and I stood for the baptism

Today (the 19th) I came in - Chuck had fallen asleep and was upset (he meant a 30 minute nap and didn't wake up) - he'd been pulling all nighters and I was the day shift 9 AM to midnight

I went and got the data - John's inflammation markers dropped by 50%!

The nurses have goosebumps.

Also - they were concerned that his brain had been severely affected (could he be cognitive)
so we lightened his drugs up - oh yes - he's in there

he raises his eyebrows, mildly squeezes your hand, tried to grab a nurse when he was being suctioned (we h ad his restraint off)
and moves his feet - he was tracking me with his eyes - shook my hand off when I petted his head (he hates that)

oh yes - he's in there

I got to hold his hand and tell him how sick he was and tell him his brother and I were watching over him and that we loved him
He got it

Today I INSISTED that he be lifted so I could give him a bath all over - found he hasn't been moved in days - like maybe 10
his back shed dry skin in sheets - he has skin breakdown on his butt and pressure marks (I have him on an air therapy bed but he wasn't on rotation all the time)
I was just a tad upset - a wound specialist will check him Monday - they did some treatment today
I am insisting on another bath for him - all over tomorrow

We did today because they had the dialysis machine down to change circuits (all the lines have to be changed every 3 days)

Tomorrow we will play with rolling him over with the machine still connected

His inflammation numbers are better - the liver slightly worse - and that is prob due to the AML cells that still run around
we cannot treat the cancer until this sepsis infection is under control

We are walking on eggs

Pepper has had a first hand glimpse of what kind of vigil I mount

I will need to try to appear at work on Monday for a bit

I told Chuck to stay home tonight - I came home at 10 - we are all on adrenaline crash

hopeful and trying to hang in there

February 20th

Chuck (my older son) has done the midnight to 10AM runs for days - I sent him off last night to rest
I have to shop this morning before going in - food, drink

It's a day to day battle but he's back in there
We know he has been out and about - rides in my car when I am upset
visited Pepper in Utah
and again at my house to thank her for coming

Keeps me intact

I have been able to watch his eyes track and his hands and feet move and him bite his tube and stop when they tell him to do so
and waggle his eyebrows at silly comments
his grabbing the nurse when he was being suctioned (a little like being strangled)
and his grabbing the rail while we washed him yesterday
was very telling

Being told it's OK to turn off your child is a nightmare - like someone reached inside your chest and squeezed. It was too painful to cry.
but hopefully - if he continues to improve and we get his body working again they will have data to use to help others

as they have told me many times - each study he has been on has added to the knowledge database - he may not have chosen that as a career - but he has served humanity well without making a splash - I just want him to be OK after all this

only 14 kids have been on this treatment for infection when neutropenic - which he is not - his counts are now up - and the AML is still there (about 8% at last count)

It would be lovely to think another family hangs on longer than the doctors were ready to do in this case

I need people for late night watches (midnight forward)
and early morning
I need to go to the office and pick up work Monday AM and then go over
I have stayed out of work for 4 days

I meanwhile will try to be civil while I lambaste his care - in 4.5 years I never before allowed skin breakdown-----
I am slightly furious - we were told the machine made moving him difficult but others gave him baths - there is just a let down in quality here - prob because of lack of staff
and kids on these machines need to be 2 nurses per room!!
We had several training teams (one senior one training) and 4 hands are better than 2 - and add me because I now identify beeps, turn off alarms, program the bed, hold tubes and things, hand things, take his temp, and fetch and carry stuff
One doctor asked questions looked at me and said - you are a wealth of information - that's good
(Because his records are 25 notebooks deep)
I've run down the timeline a dozen times for people
Jump up and down when a drug I do not approve is added - they have caused
1-2 problems doing that

It seems to be a necessary time - Pepper and I have been helping other families go thru their ordeal
One mother has no work, her daughter has AML, she has no income, needs to leave her apartment, (needs to pack up and go into storage).
and was hysterical - we were able to direct her to help (Kid will have (Medical and I told her - when it's over - file bankruptcy if things are impossible)
mostly I talked her down a few times - she had to shave her kid's head - I said - least of the problems and gave her a picture of Melissa Etheridge
Pepper and I have talked to another family whose little granddaughter has meningitis