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

Tuesday, September 27, 2011

Update



I realize it has been a while since I've updated on Liz. The reason for that is mixed.... For one thing, it is nice not to talk about the hospital, infection or illness for a while. Though it is obviously necessary to talk about those things as we work to get Liz well, it is a bummer to have to have it all as so much a part of our days. I love the times it is not..... and then I am struck with the reality that although this is not who Liz is - it is not who we are- it is a part of our life for right now.
The note above is an example of that. Kate and Lizzie's teacher had them write a note for their parents, to be left on their desk for us to find during Back to School Night. It is clear what is on Liz's mind.

Walter came to me upset the other night because he overheard the girls talking and Liz said "Mom wants us to go away to college. You can go away for us, but I need to stay here and go to LB State so I can be close to my doctors!" No matter how much we point out that she will be well by then, that she can do anything she wants, the reality is that Liz has her health on her mind. She is getting too old to distract from it all, and when she isn't feeling well she talks more and more about her health. It is such a fine line of letting her express herself and have power over her feelings about it all, while balancing her not letting this consume her. I have always said I will keel over before I let this become who she is. I just won't allow her to have the mentality that she is a "sick kid".

The update-

Two days before her colonoscopy and endocscopy, Liz had labs done on her stool. That stool sample showed no CDiff. She is still in pain and having abnormal stool with some bleeding, so the doctors aren't prepared to say yet that the CDiff is gone. She'll be tested again later this week or next. Things with the Fecal Transplant are on-hold while we wait. It is amazing to think that the CDiff may be gone, but we are hesitant to get excited because we can't say yet that that is the case. She is on no antibiotic for the CDiff right now, so the next weeks will be telling.
She is still being treated for the Candida in her esophagus. The Infectious Disease doctor added another week of antibiotics for that because we don't want it to spread to her gut.

Today she doesn't feel well at all. She has a super sore throat and chest congestion and has started with a cough. She was just sick with a respiratory virus and because of that she hasn't been able to get her flu shot (she needs it because of her weakened immune system)or her shot to prevent pneumonia (because she had pneumonia this year she must have this)...she was supposed to have those this week, but now she is sick again. This is so frustrating. We are praying this stays a simple cold as bronchitis or strep or a sinus infection or pneumonia would require an antibiotic and she cannot be on an antibiotic for those things as it would cause a recurrence of the CDiff. Such a cycle.

So that's where we're at. Waiting, watching, praying and hoping. Please keep praying with us for our Liz.

1 comment:

  1. All I can say is, we are continually praying...wishing there was more we could do. I Love You all!
    Yvonne <3

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