Today was better. We are so grateful to have such a tough little guy. After a long and hard day yesterday, Silas was blessed with a long rest. He slept for most of the day. His little body needs time to heal from the surgery and all the stress his brain and body have been through these last few days. He has his feeding tube and oxygen to help him get enough air, and his meds help keep him calm and comfortable. His face is still swollen, his neck stiff, and his legs and arms tired, but he is breathing much better. We learned yesterday how important peace and quiet are to his recovery, and so we have been vigilant to guard the door and ensure all the nurses and doctors keep their intrusions to a minimum. They have been very cooperative, but peace and quiet in a PICU are hard to maintain.
Aunt Michelle takes a shift holding Silas's hand.Silas's heart is taking a while to find its right rhythm, ranging from 50 bpm to 250 bpm, but the doctors seem confident this will normalize as his medications wane and the swelling decreases. He woke up a few times today to remind us that he was in pain, but he has spent most of the night and today sleeping. When he wakes now, he sometimes scrunches up his face, turns red, and then opens and eyes and stiffens his little chin as he resolves not to cry. His breathing is sometimes noisy, but much improved from yesterday's struggle. His eyes are once more meeting ours, and we make sure he knows we're here with him. We take turns holding his hands pretty much all day and night, so there is always someone to reassure him that he isn't alone (and also to stop him from pulling out his breathing and feeding tubes). His grip is always strong.
Today, as I looked into my son's eyes or watched him rest, and when I was tempted to feel frustrated at living in a hospital for the last week, I thought of the thousands of parents who today lost children without any chance of medical help, for whom medical care is inaccessible or inadequate, and who must helplessly watch their children suffer. We are grateful for so many things as we go to sleep tonight.
