It is an honor that you are here, Thank you!

Wednesday, April 28, 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."

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

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 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!



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


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!


"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

Emiliy's Update #6... April 26th, 2010


Uncertainty and Crisis Management...

Posted Apr 26, 2010 6:24pm
Hello, All. Here we are, again, waiting and holding our breath to know exactly where we are. Yesterday was such a frightening experience. After the code blue yesterday a few things have happened...we initially got somewhat misinformation about her neurological brain functioning--it is not completely determined as "normal functioning."

So lets clarify where we're at...her kidney function is not completely impaired but not working to its full extent...the kidneys are a bit in shock, the CO2 in her system has skyrocketed (meaning her lung function and gas exchange between Oxygen and CO2 is not working well) and, while the EEG yesterday did show brain activity, it was not fully normal brain activity, meaning they are concerned there might be some sort of brain damage--whether the damage is reversible, to what extent is is damaged, etc. we will not know for some time. Since, she has high CO2, and BUN (kidney toxins) which also impair brain activity they do not know exactly what is causing what and to what extent the oxygen deprivation from the code blue has affected her brain.

SO...we are shocked, scared, frustrated, concerned, etc. and taking things day by day/hour by hour. The plan for today is, rotation and light CPT/suctioning to help move mucus in her lungs and improve CO2-Oxygen gas exchange, Dialysis is ordered to clear toxins and remove fluids from her body (she has too much fluid impacting her lung function), and the neuro team will be continuing to monitor her and will repeat the EEG later in the week. We don't have a lot of answers as to what's happened and why but we do know a few things. Emily is strong and feisty. Her strength, gumption and strong will have always proved to be her greatest asset. We know that miracles have happened in her and will continue to happen as we all pray and continue to surround her with love. We hope, as always, that she will continue to defy all expectations and come back to us in full strength and we ask that you all continue to pray as often as possible for her (we are continuing to pray on the 14 of every hour).

Much love and hugs to everyone,

p.s. we are currently cycling through a playlist of great Hawaiian tunes, worship music, etc. that everyone has sent Emily over the last few months, hoping Emily enjoys the fun tunes :)

Emily Update #5... from April 26, 2010

Emiliy's post from April 26th.

I am posting her newest one after this, a lot has happened and I regret not informing everyone earlier, but our support and love is needed right now, and always for Em and her family.

Please PRAY for her!




He is Mighty to Save!

Posted Apr 26, 2010 2:27am
Give thanks to the Lord for his unfailing love. For his love endures forever.
(Psalm 107)

Her are the lyrics to a worship song Emily was signing last Sunday, “Mighty to Save”

Everyone needs compassion,

Love that's never failing;

Let mercy fall on me…

Savior, He can move the mountains,

My God is Mighty to save,

He is Mighty to save.

This is exactly what happened at USC University Hospital in Room 715 today. God has produced yet another miracle in sweet Emily, His might warrior. Every indication today pointed at bad news. Yet, here we are celebrating a small bit of good news- neurological tests showed no brain damage!

The Code Blue event was particularly troublesome because we know that Emily spent some time without a clear airway and there was a high potential for oxygen deprivation. Going into last night, her CO2 level was already high, meaning that her lungs were not functioning well. The Code Blue experience was traumatic for her body, especially having endured so much in the past 12 weeks.

Emily spent the day recovering from this morning’s event. She rested in bed with light respiratory therapy treatments and was unconscious and non-responsive to all stimuli. This lack of consciousness was very troubling to all of us. No one was sure if there was neurological damage done in the moments she was oxygen-deprived. In fact, a bedside exam showed that there were concerns of brain damage, but they could not say if it would be permanent. She was unresponsive and did not even have some of the normal reflexes. 

The neurology team then did an EEG to ascertain the possible impact. We waited an excruciating five hours for results. We have just found out that the test showed no brain damage. Wow! We are elated and overjoyed that our daughter has survived another mighty battle. Emily has many challenges to face tomorrow, and we’re so thankful she’ll be ready to meet them.

Thank you all for your mighty prayers today that sustained Emily. 

God bless you all!