A Rare Quiet Night
Nights are hard for Shawn Jr. Because it is difficult for him to breathe, he has to sleep basically upright, at a 65 degree angle. He is also very restless. He wakes up many times throughout the night. When he wakes up, it is because he is short of breath or because his heart has slowed and skipped a beat. So, each time he wakes up is a starteling and scary experience for him. He wakes up, bolts straight up, quickly moves to a sitting position on the side of the bed, will then walk around the room and will often go sit in a chair. In the early days, when this would happen, I would wake up immediately or he would call out for me. After a bit, if it was just a “normal” situation he would not call out for me because he wanted me to sleep. So I would sometimes wake up and see him sitting on the side of the bed. It would cause me to panic because I was not awake when he needed me. I would rush to him and he would tell me what happened. I would then try to convince him to go back to bed. He never wanted to go back to sleep because he knew it would happen all over again. It was just too hard and he would rather stay awake all night than have that experience again. So, some nights he would basically get no sleep. No matter how many times he woke up, it was scary each time.
Several weeks ago, Shawn was waking up approximately 10 times a night. Three days ago it was happening every 20 minutes, almost like clockwork. In fact, at one point over the course of about 4.5 hours in the middle of the night, I started timing how long he stayed asleep. It looked like this - 16 minutes, 22 minutes, 28 minutes, 23 minutes, 20 minutes, 21 minutes, 23 minutes, 42 minutes, and 14 minutes. Each time, when he would wake up, he would sit on the side of the bed for about 10 minutes until I convinced him to get back in bed.
Last night was different. He woke up 2 times. That is it. I slept all night while Misty and Triniti stayed awake watching Shawn. I got up early this morning. He is sleeping well right now. He looks peaceful.
As I am writing this blog, during the dark morning hours in this cold hospital room, I can hear the somewhat consistent rhythms of Shawn’s breathing. They sound almost normal. Like a perfectly healthy person sleeping hard.
He is only 12 inches away from me but I feel like he is slipping a bit further from us each minute.
There are so many things I could say in response to your moving blog post. All of it , though, goes back to the powerful, inexplicable, unbreakable love a parent has for a child. Your family continues to be on our hearts and in our prayers.
ReplyDelete