Last night Liam, out of the blues of suffering, became verbal again. "I'm mad, I'm mad, I'M MAD!!!" This is most unusual for Liam to express herself - even at the best of times. Let alone when she's under so much stress. So despite the "negative" meaning of the words, it's definitely a positive sign. It proves what I was thinking all along: that under the OOOOWWWWWies and suffering and vomiting and complaining and just-very-quite, Liam's brain is alive and kicking. She feels, the senses, she thinks. She just can't find a way to express herself.
Today the good trend continues. Liam complained a lot less, talked more (just a bit), took nice rests, and even made a small joke. This girl's spirit and love of life is something ordinary people like you and I can't fully understand. She's coming back again and again from the darkest places against all odds.
The numbers look better: heart rate, pulse, blood pressure (just a bit), etc. In the past few days or weeks we learned that her kidneys are working even worse that the 30% functionality we knew about. Maybe at 20% or so. We were also told that this is most likely an irreversible situation. But lo and behold, today they showed a [very slight] improvement. In the spirit of the opening sentence to this post, I'm hoping I'm not ruining everything with the delivery of good or maybe-good news.
Ah, karma.....
Somebody asked me in email (approximate translation from Hebrew):
Q: You wrote that you and Rachel faced or are facing tough decisions. What is your stance? Are you raising your hands up? (approx translation from Hebrew slang, which means giving up)
A: Unless an enemy soldier aims a gun at my head, I'm not raising my hands up. I'm not giving up. I'm not sure giving up (raising of the hands) is the right term to use in this situation.
Q: When Liam was intubated (artificially provided oxygen), you mentioned that you had to make decisions that parents normally don't have to make regarding their kids. I assume you were talking about if-and-when to discontinue such treatment.
A: Yes, this is correct. We did face that decision already once. Even though we were given time to consider it, this was an easy one: I knew immediately I wanted to intubate her. That was her only chance. We succeeded this time. But, it doesn't mean that the next time we have to make such decision [if there will be a next time] be as easy as the previous one. Although Liam is not in an immediate life-threatening danger right now, things could change rapidly. We already saw it happening - more than once. We have to be ready with tools to make this decision the next time. Something we are thinking about and discussing. So it's really not a matter of "raising the hands" (as in giving up). You have to make the best decision for your child; that she'd suffer the least.
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