Monday, March 21, 2016

No improvements

I wish so badly that I could report that she made great strides through the night and we get to come home.  Things have only gotten worse.

We tried to wean off some of the IV meds through the night but this morning, everything exploded and has spread to the other side of her body now.  Her third IV site is failing quickly with what they call an infiltration.  Without an open, safe vein, she can't get her much needed antibiotics let alone any treatment that may be in her near future.

This morning, her doctor and I discussed options.  He said we are swiftly running out of options.  He asked us how we felt about placing a port in her chest that would be used to deliver her meds and draw blood from. She has very few good veins left and now with phlebitis in both arms and third site on her arm starting, they have nowhere else to put the next IV.  The medications she needs are extremely hard on her veins. Our major roadblock is the fact that she has Vasculitis- inflammation of her veins.  It's constant and other than a few episodes of Petechiae, we don't notice the effects of that.  Little did I know, that condition could cause the biggest problem for us now.

The advantages to a port is that she would be in less pain for all the IV's she has to have and the blood draws.  The port is in a larger vein within her body.  There are huge risks involved...Infection being the biggest.  The second biggest risk is that her body would reject it in the same way it reacted to surgery last Tuesday.  We are between a rock and a hard place.  There are no easy answers and the light at the end of the tunnel is fading somewhat on how to help her with this massive infection.

Last night, I got 4 hours of uninterrupted sleep once I got laundry and taxes done so my energy is up and I'm feeling a little more settled despite the gloomy view, once I got back here early this morning. I'm so glad, because Shelbie is definitely done.  She is extremely upset with her situation.

While the doctor was in talking to us, she went into a reaction.  It was a blessing that he was here to see it because she always puts on a brave front when nurses are around and downplays everything.  He felt so bad and took quick measures to stop things and get a handle on her pain.  He reiterated that we can't start weaning off IV meds and we will likely be here beyond Wednesday.

Our Hospitalist here will continue to keep close contact with our team at Huntsman.  As soon as pathology is back, he will bring us the news.  I suspect that will be today or tomorrow.  He is conferencing with them to see about surgery for the port today or tomorrow.

So, we wait.  We pray.  We hope.

Here are some very closely cropped in pictures because their really are no words to describe the pain she is in.

Cellulitis 24 hours after surgery

Cellulitis with hives on top, 3 days after surgery. Imagine this, twice the size and now across her abdomen and other leg.  The top picture is what her arms look like today from the IV infiltration.

The vein finder they have to use to find someplace to put the IV- this picture was taken two weeks ago.

This is my view this morning just before another bad reaction. 

Today, this quote is what will keep us going.  From Richard G. Scott

 "Don’t let the workings of adversity totally absorb your life. Try to understand what you can. Act where you are able; then let the matter rest with the Lord for a period while you give to others in worthy ways before you take on appropriate concern again.  Please learn that as you wrestle with a challenge and feel sadness because of it, you can simultaneously have peace and rejoicing. Yes, pain, disappointment, frustration, and anguish can be temporary scenes played out on the stage of life. Behind them there can be a background of peace and the positive assurance that a loving Father will keep His promises. You can qualify for those promises by a determination to accept His will, by understanding the plan of happiness, by receiving all of the ordinances, and by keeping the covenants made to assure their fulfillment."
I am doing all I can to make her comfortable.  I have shared all my knowledge with Dr. Bates that I have about her disease and what has worked in the past.  He is such an amazing team player.  I don't understand why things aren't getting better.  It makes no sense to me.  I feel confident that we are doing every possible thing.  She is in the Lord's hands.  I have had thoughts about the purpose of this but those thoughts may be too sacred to yet find words to express.  Just a feeling I have.  I can see in some small way, that this is how it has to be for now.  
I had been asked last week to offer some service for today which I think I will follow through on.  I realize it seems counter-intuitive to spend energy elsewhere but I have faith that by so doing, our own situation will improve.  I'm willing to do whatever it takes to do the will of my Father in Heaven and heal my daughter. 
As Elder Scott says, serving without complaint is the best way to find strength and understanding.  It will free you from the dead ends of your own reasoning. 
So...this will be the plan for today and probably tomorrow, just try to do what I can and hope for better understanding.  For now, I'm feeling settled but I feel the rumblings of more struggle and tears just around the corner and not far from my heart. 

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