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Evelyn Oakley - Journal

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Posted 2013-01-31T21:25:30Z

Waiting...

Mom has asked we wait to discuss her diagnosis until Evelyn knows. They are waiting until she can talk a bit more. 

She is off intubation. Which is great. [...]

Posted 2013-01-31T16:23:00Z

More GOOD NEWS!!!!

Last night Ev's nurse called mom with some great news! Evelyn is starting to open her eyes more often! She is also starting to follow more complex commands. If she keeps it up they can take her off intubation by the end of the day![...]

Posted 2013-01-30T21:40:42Z

Another check-in

I just spoke with both Ev's nurse and with Mom. She has spiked a fever again, which they are keeping a close eye on. They also started to give her a medication to help delay the spread of these blisters. They are starting to see the spread slow down a bit. They were spreading all over apparently. On previous calls I thought it was just her thumb and back. [...]

Posted 2013-01-30T21:32:21Z

WAHOOO!!!!!!

When mom got to the hospital this morning around 11:00 our time (just after 8am their time) they were turning Ev over in bed. On a chance, mom said "Hi Ev!!" and Ev opened her eyes. The nurse said "That's your sister, Cathy. Do you know Cathy?" Ev nodded. Mom had put her hand out and Ev squeezed it tightly!!!![...]

Posted 2013-01-30T15:35:14Z

Wake up Evie!!

I spoke with both Ev's nurse and a DR. (I believe, doctor's apparently call themselves by first name in this hospital!) just now...

Her vitals are all stable, which of course if great news. Her heart rate is still high, HOWEVER is getting a bit lower and closer to stabilizing than before. [...]

Posted 2013-01-29T22:10:08Z

Some good news... along with a big concern.

I just spoke with Evelyn's nurse. There are some great things to report! Ev's swelling has gone down a bit, they gave her a diuretic late last night. Evelyn's red and white blood cell counts are back to a stable amount. Her platelet's are still low, but not severely low like before. She has no fever. She has been taken off of intubation periodically so she can exercise her lungs; they say she is doing very well with these exercies. They won't remove the tube permanently until she is awake and alert. They say this is because even her saliva can go down the wrong way while she is sleeping/unaware - causing her to choke. Her back is still covered with puss filled blisters and is black and blue. Dermatologist's came and biopsied her back tissue. They are now calling that SSSS - Staphylococcal scalded skin syndrome. Basically, the infection in her thumb is so serious that it spread internally and is coming out all over her body (mainly her back). Infectious Disease took a sample from one of the blisters, so we are waiting to hear back from them. The other tests Infectious Disease Control did all came back negative, except for the severe staph infection. Her heart rate is still fast. They don't really know why. They decided to unhook the EEG because they had no abnormal brain waves to report in over 24 hours. Neurology will not sign off on Evelyn's case until she is awake. They are concerned that she has yet to wake up. If she doesn't wake up by tomorrow, neurology will need to re-think some things and get to work. She is starting to move her head slightly, but does not respond as they would like to all pressure/pinches of her limbs, sometimes she responds physically and sometimes nothing. [...]

Posted 2013-01-29T13:33:13Z

What can we do?

The doctors are at a bit of a loss. Mom says it is like watching a House episode... when they think they are onto something, another symptom pops up that does not go with the other symptoms.[...]