I am so frustrated about so any things. I have realized how any times I am using the word "so" when writing. It just comes out and expresses better than "very" or even "totally". As I write this, I am smiling because I remember when Liz went through a time in her writing for school journal assignments when she would write so, so, so, so, so, so, so...... before describing something or a feeling. That smarty pants figured she could take up half a paragraph of just "so" and get closer towards her assigned number of pages. And, it was easier than using other descriptive words.
Yesterday, Liz was put on the books for the OR to have her PICC changed tomorrow. I have been told it needs to be done, but goodness, I do not want to put her through another procedure. So, I asked for the Clinical Nurse Specialist to take a look at the arm "one more time" to confirm that it should be done. This morning Liz and I headed to the hospital to have Linda look at her. She confirmed that removing this PICC and placing another is the right choice. Sigh.
Liz's primary Pediatrician is on vacation this week (how dare she! : ) ), but she talked to all the other docs in the group and updated them on Liz, and the on-call doctor has called twice since Friday to check on her. This morning, he called to tell me the results of her labs from yesterday. It is so frustrating to hear that her counts have gone down more since last week; they have been declining for five weeks now. Of course, Liz has had low counts over the past two years, we know that. But, her counts usually roller-coaster....they go down, but come back up, down, up. Having all cell lines this low for five weeks and declining is new and concerning. It is also super frustrating because there was hope that her nutritional status getting better would help her marrow recover, which would lead to better cell counts (because cells are made in the marrow).
I am waiting to hear if the Hem/Once team wants to do anything in the OR tomorrow, in light of hearing how her counts are just going down.
So, so, so, so, so, so sad and frustrated. So, so, so, so, so over it.
You don't know me but, I came across your blog thru a friend of mine. I want you to know that I think of your little liz often and am praying for her as well as strength for your little mommy heart to deal with all of this. May the Lord bless you and yours!
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