Liam had a rough night last night. A lot of gagging, no sleep, lost of moaning. Th GJ-tube is not working well and even though the feed was stopped, the reflux continues (or maybe it's something else???) We finally fell asleep around 6 AM. I was awakened by a special technician at 9 AM. She came to install a PICC line in Liam so they can provide her with nutrients. Strange. Nobody came and talked to me ahead of time. Oh well, maybe it was just a communication problem. But wait till you hear what happened next.
A nurse came in with a bunch of syringes - nothing unusual. She said she's there to give Liam her medications and "something to make her more comfortable". Now, I'm not familiar with medication names or with what they do. My trust is completely and wholly with the medical staff. On top of that all I want is for Liam to feel good. So when I hear such words, especially after a long night of suffering, I'm welcoming it. Luckily, another friend was sitting in the room. He IS familiar with different medications and their affects. So he said "WAIT A SECOND with this medication". At that point he got my attention (finally). It turns out that they were gonna give her a sedative to make the installation of the PICC line painless. What they COMPLETELY IGNORED is that Liam cannot get any sedatives. NONE!!! You see, her breathing is slow and shallow as is (4-8 breaths a minute). With sedation she might not breathe at all.
Wait, let's think about it again: The nurse was there with the syringe, just seconds away from giving it to Liam. THAT COULD HAVE KILLED LIAM RIGHT THERE. Sorry for all the capital letters today. Liam could have died today. This is how severe it is. A complete careless, irresponsible, and nearly critical decision. (To my understanding when Rachel confronted the Drs about it later, they still did not fully understand - or admit - their careless action.)
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Chapter 2 (better)
WOOF! After several attempts by the resident to find out what to do, we decided on continuing with the procedure without the sedative. It sounds like an easy decision, but it ain't so. You see, the procedure could have been painful and it is so delicate that it must be guaranteed that Liam wouldn't move through it. Had Liam felt pain, she could have jerked her arm, thus interrupting the process. Luckily (grin, grin), Liam slept extremely deep (since she was so tired from not sleeping last night) and didn't feel any of it - despite the tech sticking her arm several times and inserting a 37 centimeters long tube into her vein. (While the tech was working, I showed the nurse who stood by Liam's breathing rate on the monitor: 4, 8, 6, 4, 0 [!!!], 4, 6. "Do you see that?", I asked with my eyes. She nodded. She understood what the sedation could have caused.)
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Chapter 3 - readers asked (a loose translation from Hebrew)
Q: What is Lim's verbal communication like - before all this hospitalization ordeal started, and currently?
A: This is an excellent question not only on its own, but since it also give an opportunity to show the real Liam.
Prior to September 2009 we had the "real" Liam. The one who is happy to have riding lessons, asks for a snack, swims in the pool, asks for a snack, who rides the bus to school, comes home, snack, watches football and golf with her dad, snack, "drinks" beer with the guys, plays on the computer on her own, goes to summer camp in upstate New York, loves the beach, and most of all - spreads her smiles and her love everywhere.
That Liam is not a great talker, but she has words for what she needs and she gets around just fine. She has limited vocabulary and limited subjects she discusses and she repeats herself again and again.
But when Liam is suffering - and it could be as severe as the current ordeal or as simple as not-feeling-well - she shuts down. OOOOOOWWWWW is sometimes the only communication. But OOOOOOWWWW is better than complete silence still. And is she has just small islands of where she emerges out of the darkness, she immediately makes a one-word-joke to let us all know the real Liam is still there, covered by all those layers of darkness and misery and unknown.
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