Life is wonderful and difficult... and I am grateful!

Thursday, February 3, 2011

I will choose to say...




{Liz waiting in pre-op, playing a mean game of Wii. Second photo is as she was sleeping off the anesthesia. Isn't she just beautiful?}

I do not even want to write this post. For the purpose of this journal, I will.
Yesterday, what should have been a simple procedure for Elizabeth ended up bringing a devastating finding. That sounds dramatic, even to me. But it is the only word I can use to describe it, because, well, we are devastated. Many other things in life could have happened yesterday that may seem "devastating",for goodness sake, the results of the bone marrow aspiration could be devastating. But yesterday and today, the word devastating is all I have for this.
As the doctor sat with us and, showing us pictures of inside Liz's esophagus and stomach, he said "I am so, so sorry to tell you the para-esophageal hernia (part of her stomach slips into her chest cavity, alongside the esophagus, through a hernia (a hole)) is back. I am so sorry I could not fix her today." And he was. He was sad and sorry.
This type of hernia is uncomfortable and painful and difficult. But, on another person, it would be a relatively simple fix. A painful fix, due to the surgery that is needed to repair it, but pretty simple.
This is not the case with our Liz. SO not the case.
This hernia has already been fixed 3 times before. 3 freaking times! The surgeon has used Teflon and every technique known to fix it. Still, it returns.
Liz has had so many surgeries to her stomach and esophagus that she has so much scar tissue that surgery is more than difficult. In fact, during a previous surgery, her vagus nerves were accidentally cut- this was always a possibility from about the 3rd surgery on, as she has so much scar tissue, even the best of surgeons ran the risk of cutting the nerves rather than through scar tissue. Walter and I knew this was a possibility each time. When the vagus nerves are cut, the surgeon must then perform a pyloraplasty, which has led to her having dumping syndrome. The scar tissue also makes it impossible for her to have a laparoscopy (surgery done through tiny holes, where cameras and instruments are placed to perform surgery). Surgery #5 was done "open" meaning she was cut from sternum to belly so that the surgeons had more of a clear view/field to work in. Any future surgery must also be done open. The last surgery was only to last about 2-3 hours. It ended up running 6 1/2 hours. The recovery is awful. Anyway, you can get a sense of how much scar tissue she has and why, on top of all other risks, that makes her a complicated case.
You can see why the findings yesterday are, to us, devastating.
I can recall a handful of times when I have looked into my husbands eyes and seen pain, total pain, and total defeat. Yesterday was one of those times.
So, the gastroenterologist has spoken to the surgeon. I will speak with them next week. For now, she'll go on more of a soft diet and will have to eat much smaller amounts.

The second thing done on the OR yesterday was another bone marrow aspiration. The results of this will hopefully give us more of a picture of what is going on with her blood. We will have to wait a long, long week for those results.
She has had much more pain after this BMA than the last one she had. I feel sorry for her. She had blood drawn yesterday and the nurse called me late yesterday to tell me that her white count, platelets and ANC (neutrophil count) were the lowest they've been in months. Her platelets are low enough that she cannot have Motrin, which would help her hip pain, from the aspiration, the most. Bummer.

Devastation, ever-hopefulness, frustration and sadness. That's what yesterday brought us. BUT....
One of my favorite books on the Bible is Job. (Do you know Job? I will write about why I love this book so much another time). One of my favorite songs is based on a verse in Job (Job 1: 21)and I will never stop believing the words:

{Blessed be Your name
When the sun's shining down on me
When the world's all as 'it should be'
Blessed be Your name
Blessed be Your name
On the road marked with suffering
Though there's pain in the offering
Blessed be Your name
Every blessing You pour out
I'll turn back to praise
When the darkness closes in, Lord
Still I will say
Blessed be Your name....
You give and take away,
You give and take away
My heart will choose to say
Blessed be Your name}

NO MATTER WHAT, this is what I will choose to say.

1 comment:

  1. You are all in my prayers. I really do wish we could do more. Thank you for putting life into perspective for me. She is an amazing little woman! And you are too!

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