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Andy and Nanny visited Eileen this afternoon.  They were pleased to see her sit up in bed and giving smiles.  They want her sitting rather than laying down.  She was off the breathing apparatus all day but they were going to give it to her tonight so she would sleep well.

Sarah visited  this evening.

“We were there with her last night n she was awake for awhile. She was smiling and trying to tell me things but I had a really hard time understanding what she was saying. I told her I loved her and she mouthed it back.
She looked like she was getting tears in her eyes when I couldn’t understand her. She looked very frustrated. But at one point she told me to bring more people.” -from Sarah

When Andy David and Wendy arrived this afternoon, they were taking Eileen for a cat scan of her lungs and abdomen. So they didnt get to see her until 6pm tonight.

It was a short visit Eileen was tired from being sponge bathed and bandages being changed. She was off the respirator for an hour today. Her meds for pain were increased. She didn’t want to open her eyes but managed a smile when they left.

Andy and Laraine stayed with Eileen for almost three hours until there was some kind of situation with another patient in the ICU and they all had to leave. They visited again a few hours after that, but she was sleeping and they decided to go home.

Overall, Andy is pleased with her progress. They have started physical therapy and told him to move her arms as much as possible, so he does that while he is there.

“She is obviously getting better – she is complaining” ! She wants to go home. (they are reading her lips and then repeating it and asking her if that is what she said.)

She was off the respirator for 1 hour 40 minutes and did well.
She is very alert. She did not want pain meds when the nurse asked her.

The plan for Thursday afternoon is that Andy Dave Wendy and Ethan would drive to Cleveland.

9:30 a.m. Andy and Nanny are on the PA Turnpike driving to Cleveland. Andy is very upbeat. Dr. Havlee, her neurologist told him that it will be a long road but Eileen is on the road to recovery.   Once the infection is taken care of progress will be better every day. Yesterday she moved her shoulders, feet, legs and arms. There is no damage to the brain.

10:00 p.m.  Andy is back home again tonight.  He said he spent the most time yet at Eileen’s bedside – about 1 1/2 hours.  He brought her pictures.  He read all of her messages that have been posted by everyone.  Some brought smiles.  Some tears. She has seen all of her cards.  Thanks to all for your messages of concern and prayers to give her strength to win this battle. The doctors continue to see improvement.  She is breathing 85%-90% on her own. They sat her up in bed today.  They are talking about starting physical therapy on Thursday.  They are going to wait a little longer to do the colostomy until she is stronger. They are hopeful that after the colostomy that the fistulas will heal on their own.  They hope the colostomy will be temporary. The neurologist confirmed again that all tests are normal.  Andy asked about re-introducing Reliv as a source of nutrition and has been told this will be ok. Laraine plans to accompany Andy to Cleveland tomorrow.

After spending the day in Cleveland on Saturday and talking to the doctors and nurses I think I may be able to shed some light on my dads most resent thoughts.

1.)    They are not sure how she got the virus in her blood stream.  Important for them to get this figured out.  First step, they removed the Pick line from her arm and put a central line in her neck.  Will do a culture of tip of removed pick line to see if that was creating the virus. No results on that yet, if they do not find bacteria there they will check other possibilities.

2.)    They wanted to check her heart to see if the virus was causing any damage to her valves.  I believe they did a ct scope to check her valves and everything looked good.

3.)    The fistula area:  Her team of doctors want to redirect her colon to a colostomy bag. Once that area is dry of fluids it will no longer pose an infection threat and will hopefully heal on it’s own without further surgical repair.

As per the docs saying she does not have Vasculitis, I wouldn’t jump to any conclusions this was one doctors thoughts and we haven’t talked to the rheumatologist yet to see what her thoughts are.

The Trach. Ventilator:  she’s on ventilator support because her lungs are not strong enough to support her breathing, they’ve taken her off vent support at least once maybe twice.  She’s done ok to start out but gets too tired and can’t keep up and the nurse puts her back on support to keep her lungs from collapsing.

Notes from my short conversation w uncle andy this evening:
(typed on a blackberry with a tiny keyboard, no spell check, and NO AUTOSAVE!)

-drs do not think she has vasculitis. Do think she has rheumatoid arthrisit
-does have infection in her blood. We do not know what kind, but she is on antibiotics.
-no longer on any “sedation meds”
-lowered steroids to 20
-lower dose of pain meds as needed- indicated by rising blood pressure/heartrate
-no plan set to resolve colostomy/fistulas
(Originally there were 10+ bullet points… but then I managed to erase the entire post and now can’t remember them all)

Uncle andy & nanny are home. Going back over in the morning.

Questions:
-no vasculitis? Meaning it is something she hasn’t been diagnosed with yet or that is it “just” rheumatiod arthritis? If so, how does that explain her current condition?
-blood infection? Virus? Bacteria? Cause of her “issue” or “just another hurdle”?
-any mention of sjrogrens syndrome passavant drs diagnosed her with?
-trach? Still needed? Why? (I never understood what happened to her ability to breath on her own?)

Gotta stop typing- emmy can’t sleep with my ‘clicking’!
…Anyone want to add to the list?