So, as of this past Monday, 6/18/12, Elise has been formally placed on the liver transplant waiting list. I got "a call" on Monday...not to be confused with "THE call" from the transplant coordinator--Julie-- saying that Elise is officially listed with a PELD score of -3. The PELD (Pediatric End-Stage Liver Disease) score basically reflects priority on the wait list, or risk of mortality without transplant. So considering this, it's not a bad thing that Elise's score is low right now. Her doctor believes that he she will be granted exception points within the next 30 days or so, which will increase her PELD score somewhat. We'll see. Bottom line]is that we now need to be prepared to get called for transplant at any time. When it's a match, it's a match!" (click below to read more)
Over the last few days, I have noticed that I'm obsessing over every little thing. I have the urge to call the doctor's office with all of these little questions I have, such as "What's Elise's vitamin-D level?" and "What's her platelet count?" and "Are her bile salts high or low....or normal?" I've now had a revelation: I'm directing my anxiety and energy towards all of these little, unthreatening questions that can be easily answered rather than confronting the BIG question on my mind which no one can answer: "When is this transplant going to happen, and will my baby be okay??"
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