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.
Amber's Way 
I believe that amber is the dragon. And wants to fly around and play with Rea. And won’t give up any time soon. She is determined to get home and see Rea❣️❣️💙💙💚💚💜💜🐉🐉
Beautifully said, Matt. 💚
I go back and forth about who is braver, stronger, more admirable, but I really don’t know, can’t make up my mind. Amber, Caron, Matt. All of you are inspiring and heroic. Your strength and faith and resilience are truly incredible, all of you. Bless each of you.
Almost home sweet little miss… You are so brave Amber. Someday you’ll read all of these amazing posts from your parents and wonder where they got the strength…. From love.
This is such a Beautiful Journey. Yesss the Dragon is fiercful. Ready to be released and Conquer what’s ahead. Matt/Caron all you have to do is Guide Her. Ask for wisdom and Knowledge and I so trust you two in God. You two are AWESOME Parents. May God just bless your day today and strength be built more inside you two and Precious Amber in Jesus name Amen
So glad to hear that Amber is feeling better after the latest barrage of medication, anesthesia, surgery, etc….who WOULDN’T see dragons??? She’ll soon be home and that in itself will be a wonderful tonic for her. At the same time, it’s natural to feel a bit apprehensive about delivering home care but you will be fine. There are many resources available, such as an on-call nurse available through many health insurance carriers so when you review Amber’s discharge care plan ask about these kinds of things. Knowing all the resources will help lessen your anxiety and you’ll soon get into a routine while Amber continues to kick the dragon/whale/elephant’s butt!!!
Amen!!
Caron and Matt,
I’ve sent over a number of spiritual and philosophical comments, this one is practical.
When Phil, my step dad, came home from the hospital after his cancer surgery his insurance covered home nursing and a number of other things that helped us make life work. Our insurance plan also has some great benefits that our People Team can help work through. I figure you’ve already done that home work but wanted to encourage you to look at all of the options. Having kind, skilled, experienced hands around for even part of the day was a huge help to us and let us invest time in the other ins and outs of keeping a home and family healthy.
You and Caron are my heroes, you’ve been through thick and thin on this and we all know the work’s not done yet. I know bringing a stranger into your home may not be the future you’re hoping for, but in the near-term, it may be the future that your whole family needs. I think there’s some kind of circular blessing pattern going on here, I found that most of the home health care workers who came through my folks house blessed us in ways we hadn’t expected. There is a lot of love between us but there was a time when each of us needed to just sit down, individually and love ourselves just a little bit, to catch our breath and recuperate. My Dad is the biggest giver I know, shirt off his back? No problem. But even he will tell you that if you don’t make a little time to rejuvenate you run out of steam and become ineffective. Our nurses were a blessing to all of us and sitting up on an overnight shift with one of them I realized that in a lot of ways we were able to bless them too, sharing Phil’s memories World War II, his time in the Navy, in Law School, working with the Hopi and Navajo, his teaching them to sing “I’m a Yankee Doodle Dandy”, letting them bless us with their care and kindness was a blessing to them as well.
Their gift in life is giving care, letting them give it is part of the circle.