Sunday, December 19, 2010


All changes, even the most longed for, have their melancholy; 
for what we leave behind us is a part of ourselves; 
we must die to one life before we can enter another.  
~Anatole France

It's looking like 2011 will be a year of change around here. There's a lot going on behind the scenes - big big changes are afoot. Big changes, and even some little ones, can be scary.

The most obvious change heading our way right now is that Acorn will be getting his trach out. He's capped all day except for his nap (and he's catching part of his nap with his cap on too). He has to go all day, including his nap, with a cap, before they'll schedule decanulation, but they won't schedule it until the spring anyway (to avoid pulling it during cold and flu season and then having him end up back in the PICU with a severe illness).  They told us to expect it to take a long while to work up to wearing it all day - a couple minutes at a time, even - but within a week he was wearing it all day without any issues.

When we started capping him, we also downsized his trach, and that has meant he's not sleeping on oxygen either (which shouldn't happen, logically, but it seems that kids with BPD/CLD are super picky about pressures, and the difference matters to Acorn). It's so amazingly quiet in here without the oxygen concentrator running - not that we hadn't realized that during the day, but during naps, and at night, it's almost eerie -there's not a sound through the baby monitor, and that's so amazingly different from a year ago, when we listened to him breathe with the help of the ventilator.

But decannulation also comes with some down sides. We lose nursing, and we need to find Acorn a daycare situation. We lose the ability to treat hard-core illnesses with the equipment and supplies we have here at home. We lose the security of knowing that if anything does happen, we already have a guaranteed airway - our recussitation bag doesn't have a mask, just a trach adapter. 

Not that we've bagged him in the last 18 months, but I've got a friend whose child recently had a febrile seizure and stopped breathing, and the panic in her voice even a week later was horrifying; here we have dealt with a child not breathing and turning blue enough times that it isn't such a shocking thing anymore, especially since we have all the equipment that an ambulance would have.

Anyway. There are other changes coming too, and I know I'll be talking about them in their own time, but if one big change is scary, think of how several all at once must feel. I keep reminding myself that it really is a light at the end of the tunnel, not just a freight train.

1 comment:

  1. That is so awesome about decannulation!! Go Acorn! I remember the excitement when Ivan lost his trach. And the bittersweet feeling of losing nursing. And having the air machine on all the time. We put the subtitles on our television b/c we couldn't hear...he was in a mini-crib in the living room with me (on the couch) at night for central access for the nurses, so the machine was constantly on in the main room. Oh boy, reading this post with such excitement for you and reminiscing about our own days on this path. Good luck and I can't wait to hear how everything goes!!