Owen’s breathing has been Fan-tab-u-lous lately. I mean, really, really good. Even through his illness last week, he’s done amazing. Because it’s been so good, we only have him on the monitor when he’s sleeping and nearly every time I walk into his room his cannulas are not in his nose and I’d never know by looking at the monitor or his breathing patterns. I checked in with Pulmonary yesterday and they weaned his diuretics again. He’s now at ½ what he was getting just a month ago. From my Google wizardry and rounded math, his current dose is at the bare minimum of what’s considered therapeutic – in other words, anything less isn’t going to do much.
Great news, right?
Yes, but, I got to tell you, it TERRIFIES me. If it weren’t to prove the point of the topic of this post, I’d delete that opening paragraph. Cross it out with permanent black ink, send it through the shredder and watch it burn in the fire pit until I knew every shred of paper was ash and, just in case, I’d bury the ashes.
No doctor has said a word about life without oxygen, but I can see that there isn’t very much medicine in the syringe and there aren’t many dials left on the oxygen tank. Is there really a day in the coming months that oxygen may not be a part of our life?
Seriously, just writing this idea sends tears down my cheeks and I have to remind myself to breathe. To pick my baby up and have nothing attached. To walk down the stairs without having to yell, “look out below” before I whip the oxygen cord over the balcony. To run in and get Kellen from school, with nothing but Owen and my keys in my hand….
Okay, that’s it. I can’t go any further with this midnight day-dream.
It’s a wonderful dream, but I can’t make too much of it. What if my making too big of a deal of wanting this dream will jinx it from really happening? I’m sure a few of you are shaking your head and thinking, “Tatum, you’re being unreasonable.” But I remind you, in January we thought we only had a month or two left on oxygen and then everything spiraled out of control and he was in the hospital for almost 50 of the next 90 days never coming off high flow. Need another example? Late last summer, we set up a care conference to discuss the going home plan. That very day Owen stopped breathing in a very grand fashion, the doctors started testing him for fatal genetic diseases (which he does not have) and we discovered his poor body was full of broken bones. Another example? When Owen was first born, we started hearing talk of extubating him in his first days. There was real thought that he’d lose the vent shortly after his PDA ligation. Even if you don’t know Owen’s story well, you probably know, that’s not even close to what happened.
So here I am, celebrating the steps that Owen’s making, but also terrified to expect anything more. There is always hope and I dream of the day that this wish will come true but I also keep looking over my shoulder wondering when the bottoms going to drop out. Is this really going to be “it” this time around, or are we going to face more setbacks – another Jinx?
The fear of the jinx is the anxiety of the parent of the chronically ill. I can’t really say it’s rational or irrational, but it’s the way both Kyle and I operate. When we found out Owen was going home from the NICU, we knew the plan a full week before it happened. I barely put a post in CaringBridge that week and I kept a lunch date with a friend the day before he was set to go home, because I didn’t want to admit he might be leaving soon.
I have no idea how much longer Owen will need oxygen, it really could be weeks or months but I know this – if things keep going in the right direction, you’re not going to hear much else about it from me. When we have an announcement, y’all will be the first to know – and seriously, we don’t see Pulmonary for another month, so don’t start getting too giddy yet. We still have at least a couple of months.
Prayers, positive vibes and good thoughts are, as always appreciated.
Does anyone else have this fear?© Copyright Tatum, All rights Reserved. Written For: Ain't No Roller Coaster