Tonight my sweet “Christian” had some trouble with his infusion of factor and needed a dose of IV Benadryl. Unfortunately he developed a pretty serious headache and was in quite a bit of pain, so he took some Tylenol and we turned off all of the lights and electronics in the room.
The only sounds were from the sterile water for the oxygen bubbling in the background. And the only light was shining from the pump and monitor.
I didn’t know how to help him with his pain but knew I needed to distract him so I started to talk about my trail riding adventures with my friend “M”. I told Christian about the skull of a dead animal we found, how the dog that accompanies us chases the rabbits and I went into detail about each of the horses at Ms. “M”‘s corral. He was engaged, asked questions and is looking forward to meeting the horses and feeding them carrots.
Nighttime can be scary. It’s when you watch the oxygen and heart rate numbers on the monitor as your child is sleeping and you wonder why the numbers fluctuate…your anxiety can consume you.
Nighttime is also a time when your mind can wander and you start to think the worst…I mean the absolute worst. You go places in your thoughts that you have no business going to and you work yourself up into thinking about the worst case scenarios for your child. Then you lose sleep and feel yucky the next day.
Nighttime can also be a time when you get filled with questions and you want answers and you are not able to meet with the doctor until the next day.
But what I am grateful for is that the morning will be coming. Things will look fresh and hopefully we will be blessed with another day filled with continued healing and answered questions.
Most importantly we have the chance to see our child in a “new light” and we continue to do everything we can as caregivers to make sure that the most is made of each day in finding a solution to a bleed and provide some well needed relief…even if it’s through a story.
