Our #LukaTheLion started to emerge today. The juxtaposition of almost going to the PICU at the same time cognitive function improves is such an unlikely pairing. His belly is still quite big, but so far it’s not affecting his vitals too much and he was able to sit all day today when not napping. He even was able to move from sitting to laying before bed. Not much progress was made on decompressing the belly partially because the NG tube placed overnight is the kind mainly used for feedings, and not the tube type for decompression like he’s had before. There were some “I’m sorry’s” for the situation, and then an illogical theory proposed for why this happened. Either way you slice it, he got another (correct) NG tube placed today around 1 pm to achieve the end goal of decompression. I share this anecdote not because I’m excited about what happened, but because it was yet another way our lion showed us he’s boss. If any of us adults had to have inadvertently two tubes (or even one, really) placed down our noses to our stomach, we would A) be very upset and B) not do well with it. In our lion’s case, he handled it like a champion and I noted a “bead of courage” in his journal tally for his bravery.
Our lion’s improvements on cognitive function today felt miraculous. He had a tiredness to the look on his face (probably an extension of little to no sleep last night), yet at the same time he was the most alert he’s been since we got here almost 9 weeks ago. Not only was he vocalizing what I could make out as sounds similar to the words he used to know, but he was interacting and showing pretty high level of understanding while associating objects with each other and unique things he used to do. That’s what was perhaps the most refreshing — that he was demonstrating sophisticated recall and not just starting over with a clean slate. Some of my favorite “Luki throwbacks” that emerged: the back and forth rub he does on our backs and his animals to show “I love you,” associating Babcia with “food,” saying “play” when two nurse friends visited after they heard he was talking, identifying “lions” all around him, howling with his dogs, having extended conversations with me about what food he’d like to eat ranging from applesauce to cookies and ice cream (he’s never even had that which was fascinating), clapping after taking oral meds, pointing to daddy like they used to do in tandem from afar, saying his “no no” when we read 5 Little Monkeys Jumping on the Bed, and – my personal favorite – seeing an iPhone and trying to take a photo of himself while saying “cheese” with a little smile. I joined in. There was so much more I can’t even list it all. And what made it even more special was that it happened in the morning, afternoon, and early evening – showing that the emergence of his personality lasted at least for the duration of one day. We shall see what tomorrow holds and hopefully his belly goes down without any major complications while his personality, vocabulary, and genius continues to emerge.
Emerge, #LukaTheLion. Emerge! (Now belly go down.)
