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

Thursday, November 3, 2011

Torn

I am torn. In many different ways today, I am just torn.

It is awful to feel like I am being pulled in different directions. Kaitlin and Jackson have been crying for me, pleading for me to come home or at least offer the promise of a date we will get out of here. I cannot do either. Kate tries to hide her tears because her maturity now allows her to know that her tears mean I will feel torn and she wants to spare me. So, I encourage her to cry to me if she must, all the while feeling her pain as she does. The tears are more than just missing me, they represent the change in routine that Kate especially thrives on as part of her very being. They represent the worry they have for their sister, something we strive hard to not allow to happen, but as the kids get older, they understand more of what goes on. It is so important to me that Kate and Jackson not carry the burden of their sister's illnesses or any feeling of responsibility in her care. They are kids after all and I won't allow them to feel a weight of this....and yet, it does creep in no matter how much I wish it would not. When you love someone, when you share your life with a sibling, you feel their happiness and you feel their pain. That is life and I cannot protect them from it.

Elizabeth has these doctors running in circles. In my mind, figuratively they are scattering mice, bumping into each other as they chase the cheese. One says go left and another says go right and no one ever gets the darn piece of cheese! Even the mice are torn in differed directions.

After 7 days of a 14 day course of antibiotic for the CDiff, she has not had change so we are at a point where we need to change meds. Remember, there are only a few meds used to treat CDifficile and since April, only one has had any effect.....and that one is now not treating it. We face the decision of going the full course and taking it for another 7 days to meet the 14 day course, or jumping ship with it because it hasn't worked yet and we don't want to use it if it is not working, mainly because we don't want her body building an immunity to the drug in case we need to ever use it again. Confusing, I know. I give the final "okay" for these drugs and that decision alone leaves me feeling torn.

Within the next couple days a BIG meeting will take place. The case manager is putting together a meeting where all of Liz's doctors- pediatricians, Infectious Disease team, GI team, Pulmonary, Immunology, Hematology, Surgery- will all be there. Lookey-loos will be there too to see "CDiff girl". We are waiting for a few doctors to get back from a Cystic Fibrosis conference so that they can attend the meeting.

It was also talked about today that it may come to us transferring her to UCLA (Walt gave me a look that I knew meant he would rather pedal her down the 405 freeway on a bike than pay for an ambulance ride, but he refrained knowing his sarcasm is enough to push me over the edge right now). That too will be decided in the next few days.

Please, please pray for Liz! I covet your prayer and the prayers of strangers. I will ever stop asking for prayer on the behalf of my Lulu.

Simply, overwhelmingly torn.

1 comment:

  1. I do not know your family but my heart goes out to you all. My prayers are never ending. I found this post through Andrea when she asked for prayers. You have had to dig deep to get the strength you show as a mom I never want to know your pain and I will continue to pray for yours to go away with Gods will and guiding holding hands. Gods will is strong do not give up faith and hope.

    Char Cumpian

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