Today was not a great day for my little sunshine. He spent most of his time either completely out of it from meds or crying because his tummy hurt. The tiredness makes sense to me. After all, he's 4 years old and has endured 4 surgical procedures in the past two weeks. That's a lot for anyone to handle. The tummy pains are a little more troublesome. Although we've liked almost every nurse we've had in the PICU, it seems like the default response to a complaint is to immediately medicate. And in Logan's case, said medication serves mainly to knock him out, which effectively ends the crying but does nothing to find the root of the pain. So after listening to a dayful of him offering up periodic frantic cries that his tummy hurt and seeing the pain in his beautiful but glazed-over eyes, enough was enough. I talked to his nurse at length about my concerns and a doctor finally came by this evening. She didn't get to examine him because he was asleep and we didn't want to disturb him when he was peaceful, but she said she'd put in orders to get him some Zantac. Well thank goodness. My hope is that it's something as simple as acid reflux - which is very possible given the lack of eating, tons of meds, the fact that his shunt drains into his tummy, etc. Seeing him in so much pain is like a knife to my heart.
I stayed with him from noon to 7 PM when Adam returned to take over. On my watch, he had a quick MRI to check the shunt (which was fine) and a hearing test to establish a pre-chemo baseline, since one of the drugs can potentially harm hearing. As with all of this, it breaks my heart. He was extremely drowsy during the test courtesy of one of the aforementioned knockout meds, but his left ear passed very well anyway. The right one did not pass but the audiologist suggested that it was likely because of some fluid behind his right eardrum.
Adam returned at 7 to take the night shift, and I drove back to Pleasanton with Abby and Isaac in tow. Abby went down easily; Isaac did not. He shares a room with Logan and kept chattering at me and pointing at the empty bed across from his own. He even made sure that Logan's water cup was in its usual place on the nightstand. He misses his big brother.
Although today was a far better day for me mentally than yesterday, I'm still heartbroken. I miss my sunshine. I miss his smile and his silly dances. I even miss how he wakes me up at 6:30 every morning by climbing into Adam's abandoned spot in our bed and whisper, whispering to his lovey, Lambie, as he lovingly rubs his well-worn ears. I want him back and healthy and restored so badly that I can hardly breathe. I feel like I'm coming out of my skin much of the time when I stop and really realize, really internalize what's happened and what's to come.
This is a short one tonight. I don't have much energy, and I need to see where Isaac finally decided to fall asleep, since he spent quite a long while standing at the gate atop the staircase before finally falling silent. Please continue to pray for us. Pray especially for Logan to re-develop an appetite, and for his tummy pain to go away. And as always for complete healing. Thank you.