Following the successful surgery yesterday, we spent the following 24 hours in the ICU. Unfortunately, between the after-effects of surgery, the variety of medications for pain; sedation, seizure, nausea, constipation, and the general constant noise of the monitors and business of the ICU, Amber decided she didn’t want to sleep. So while I went to bed around 10 PM and swapped with Caron at 2AM, we each got around 4 hours of sleep, Amber got a total of maybe 30 minutes of sleep. By the time morning rolled around, the combination of exhaustion and medications had her very disoriented, and was messing with her vision. She couldn’t remember where she was, at one point even thinking she was outside. She told me it looked like I had another nose coming out of my cheek, and then she thought there was a dragon flying around the room.
And – she was cranky, like any 6 year old would be after 24+ hours awake. Heck, I would be cranky too if I had gone through what she has been through. And this manifested itself repeatedly through the day with her breaking into sobs of despair, wailing through the tears about how much she misses home.
As her parents, this is all heartbreaking to watch. But oddly, it is much less concerning than it would have been 6 weeks ago when we started this. Our baseline has been reset. It’s not that we’ve become numb to this, it’s just that we have a better understanding and appreciation of the risks and impacts now, and we’ve come to know and trust the people taking care of Amber. We don’t jump every time one of the monitors beeps now. If the worst thing she experiences coming out of one of these surgeries is an imaginary dragon, then that is far better than what we thought our best cases might be 6 weeks ago.
But the real Dragons, the unknown, the uncharted territory, lie ahead of us, and not so far away anymore. Amber will be getting her wish of heading home soon. And while there is tremendous relief in this, it is also a bit terrifying to know we will be the sole caregivers for her again, with some new responsibilities beyond what our parenting role had been before. But, we embrace this, we will do whatever needs to be done. And we are very appreciative for the support of our family and friends in helping us through this, and through the scarier Dragons that loom further into the future.
Amber was cleared to return to her room on the eight floor shortly after 1:00, and got to take a short nap before dinner. A little real food in her system helped cheer her up a bit, and then she let me cuddle with her in her bed while we watched some TV (her favorite show: DC Super Hero Girls) until those little eyes couldn’t stay open any longer around 8:00. As Caron and I both do with Amber just before she falls asleep, we said the Rosary, and she is now in a deep, peaceful sleep.
And as I sit here next to her bed, writing this blog post, watching my beautiful little angel snooze, I thank God for this time with her. We have a sense of some of the major challenges ahead of us, but we don’t know what the future will be. We do know, however, what the past 6+ weeks have been, and what could have happened. Dragons or not, we are going to appreciate every day we get with our family.