Today was very good in many ways, but also quite hard at times. John had an excellent night’s sleep. But around 6:15 this morning he woke up screaming and was inconsolable for about ten minutes. My guess is that only some of this was caused by pain. He told me later that he was crying because he was scared. He’s been in the hospital for almost one week now, lying in the same bed, dealing with significant pain. It must be awful to wake from a good night’s sleep and find himself still there. Please pray for peace and comfort and hope and God’s protection over John’s sweet and joyful spirit.
We saw continuing signs of progress. John took four walks. Less fluid drained from his chest tubes than yesterday. He ate a bunch of snacks (and accidentally smeared Cheetos dust all over his white sheets). His bowels are working. He was happy and silly at times.
But early this evening John experienced such terrible pain in his back (we think from the chest tubes) that his nurse had to rush a dose of morphine. And over the past couple days he’s become much more resistant to taking medicines orally, sobbing for minutes before swallowing even the medicines he takes daily (without fuss) at home.
We are encouraged by the big picture. But it’s easy for us, and even easier for poor John, to lose sight of the big picture in the tougher moments. Thank you for continuing to hold this precious child in your thoughts and prayers.