I am so excited you came by!

Wednesday 28 April 2010

Emiliy's Update #7 & 8 ... April 28th, 2010

"The best and safest thing is to keep a balance in your life, 
acknowledge the great powers around us and in us. 
If you can do that, and live that way, you are really a wise man."
~Euripides


This is Em's update again, I know i should be writing about myself, but em plays a vital role in CF, and she should be recognized for what she has been doing.  With praying for her, and making it a point to let the world know how valuable she is, it just might help her get back on her board.

Pray and Pray as much as you can, to ensure that Em, get's all the prayers she deserves.

Thank you
Ali


A Tribute to Emily, taken at the Vancouver Olympics 2010,
You could find the Inukshuks in perfect balance all over the river front,
Here's praying you become balance soon.

A Delicate Balance...

Hello all, we're still here and there hasn't been much progress. CO2 is still dangerously high and Em is still holding a delicate balance. The plan has been to do dialysis to remove fluid (with hopes to lower CO2) but dialysis has been unable to get going because Emily's blood continues to clot in the machine...so they are measuring blood viscosity (thickness) and going to be giving her heparin to help thin the blood so they can get dialysis rolling. This is risky because of the bleeding she has had in her lungs and GI system but they need to remove fluid because her body, lungs, etc. is still very edematous (puffy and full of fluid, toxins, etc.) the fluid and toxic buildup is contributing greatly to her high CO2 levels. Lowering CO2 is the primary goal of today and the doctors are having to make very difficult decisions.

Today they did an additional EEG to check brain and neuro functioning and we are awaiting results--we still don't know much more about what is happening in her brain and may not know for some time. They have also sedated Emily and have given her body a paralytic drug so that the vent machine is able to process her oxygen as efficiently as possible. It will allow the vent to be run at a lower pressure lessening the risk of a pneumathorax (collapsed lung) and hopefully allowing her body the ability to focus on processing the O2-CO2 gas exchange. They are switching vents to one that runs with a helium-oxygen mix which can also help improve the CO2 levels in her body.

Much is happening and we are hoping to see some progress over the next few days. Everything here is in an extremely delicate balance and we are very worried. We know as always that Emily's life is in danger but we also know that she has an amazing ability to surprise everyone. Please continue to pray and send healing thoughts our direction.

Thanks so much, hugs and love to everyone!

Julia

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"We can be sure that the greatest hope 
for maintaining equilibrium in the face of any situation 
rests within ourselves."
~Francis J. Braceland

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Balancing things out

Hi, All. Diane here. I am happy to report that this morning, things seem to have stabilized a bit for our wonderful, strong Emily. Her CO2 level has come down significantly, but is still high. The dialysis has been going successfully since last night and they are gradually reducing the edema (swelling) all over the body. Her blood pressure is stable. The vent pressures and volumes are gradually getting better, though not there yet. There has been no bleeding in the lungs or trach site. I think it is safe to say that in terms of vital functions, we are trending in the right direction. This is such a relief because 24 hours ago- even 12 hours ago- we were very worried. Yesterday was a very stressful, worrisome day.

It will take time to get more info on the neurological impact of the code blue event. From Sunday to yesterday, her basic responses have varied and she is unconscious. There are still multiple factors that could affect her responsiveness- CO2, kidney function, etc. We have to keep waiting and praying on this front.
 

On a personal note, I am so very glad to have my sister, Nancy, visiting this week from Ohio where I grew up. We are close and share the bond of being CF Moms. Nancy lost her son, JD, to CF fifteen years ago at the age of nineteen. I have been telling her not to come because I thought it would be too hard for her to relive this hell, but she is quite stubborn and insisted that she wanted to be here for me. I can't express how much I appreciate her and love her company
.
As we go through this day, we are just continuing to celebrate small signs of improvement, regather our strength, and get ready for the challenges ahead. Thanks to you all for your continued support. We are encouraged beyond belief!


Love,
Diane



"Live a balanced life - learn some and think some and 
draw and paint and sing and dance and play and work every day some."
~Robert Fulghum

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