Aaron has been sick. He's fighting off something, something upper respiratory. But he seems to have peaked and tolerated things well at home. He has been home from school, and frankly not gone anywhere since Wednesday morning.
This morning is the first time I've taken him off the vent since then, too. We'll see how he does.
But we haven't been in the hospital. We haven't even bagged him, although I came close a couple times. He's gotten albuterol treatments about once a day, instead of every six or four (or even two!) hours.
And he's screwed up his sleep schedule again. Yep, party monkey is back in full force. "Bedtime" last night was 4 a.m. this morning. Thank heavens for wonderful night nurses!!
I've been thinking a lot about siblings lately. Yeah, the unsung heroes in these battles. They do so much, and do without so much.
One son's teacher (really a nice lady, I do like her a lot) asked where he went on vacation for spring break a couple years ago.
Um, that would have been nowhere. Instead, he stayed home with his siblings while Dad was out of town and Mom and Aaron hung out at the Hotel on the Hill, enjoying the amenities of the PICU.
Last week, I was doing Aaron's cares, and Michael wanted to do them instead. He's NINE. Nine years old, and he did trach cares, including changing ties, and g-tube cares as well as many I've seen do them in the hospital. Then he changed Aaron's diaper. He wants to do the next trach change.
Yeah, change the trach. Something many, many adults have a lot of trouble wrapping their minds around. But it's part of his life. He knows sat monitors, wave patterns, when it's bad, when it's good. He's grown up with it.
Andrew (12) just checked on Aaron's alarms. Bad wave pattern, bad numbers. So he did some troubleshooting. Good wave pattern, bad numbers, oops, oxygen was undone. Hooked it back up, and did a capillary refill test to make sure that Aaron really was okay and the monitor was being accurate. Last time we had to call the ambulance, he bagged Aaron, keeping him breathing and comfortable, and asked if I'd thought to change out the trach.
And the others are no less knowledgeable or capable, even if some would rather not deal with the stomas.
But underlying all of this, underneath all the medical knowledge, skills, information, is the knowledge that their brother will not be here forever. And they are not alone in that.
This morning, a friend and her sweet baby left for the Mayo clinic. Her little one has a complex heart condition. She's just over two years old and is going to the best pediatric cardiac surgeon who will be attempting something that hasn't been done before. Because that's little Capri's only chance.
And her brother and sister know this. And it's heartbreaking. Her brother's tearful comment was, "I'm afraid the next time I talk to my sister, it will be in a graveyard." He's six. Do most six year olds even know where or what a graveyard is? Other than a spooky place on Halloween, I mean.
When a child is born with a broken heart, it's not just one heart. It's three, or more. Because it breaks the hearts of each family member as well. When you remember the little ones with special needs, remember their siblings, those standing in the shadows. The quiet heroes behind the scenes who love their brothers and sisters with a fierce, protective passion. Who play and goof off and contribute so much to each family.