Owen’s (Second) Open Letter to Nasal Cannulas

Dear Nasal Cannulas,

Well, here we are…still.  I wrote you that letter way back in June letting you know that I really appreciated all that you’ve done for me but this isn’t going to be a long-term relationship.  I mean, I know we’ve been together longer than most, but I made it clear, this isn’t going to be a permanent situation.  It’s starting to feel like we’re Jake Gyllenhaal and Heath Ledger’s Characters in Brokeback Mountain and you just can’t quit me.

Just to be really clear.  I plan to quit you real good.  Well, you know, as soon as the doctor approves it.  Yep, I hear the word and you’re out the door.  Or… at least in the backroom so you can be there in case I get sick and need your help.  I won’t jinx anything by sending you completely away.  (My mom’s really superstitious about these things.)

So, I’ve been thinking about it a lot lately and I came up with an idea.  You know all the stories of people in Hollywood having fake relationships for PR reasons?  They aren’t really dating, but they pretend to date to improve their image?  I’d like to suggest that we take that route.  I don’t want to jinx myself by completely getting rid of you too soon (plus, the Pulmonologist thinks she gets a say in these things) I know you’d like to stick around with a hot number like myself for as long as you can, so for both of our sake, we’ll just pretend to be together for this last stretch.

Here’s how it’s going to work:  When we know we’re going to be around the paparazzi (I really have to talk to Santa about that darn camera he got for my mom), we’ll act like everything is perfect.

Here we are looking happy as can be at the Playroom Premiere.

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Maybe a little off-kilter, but we’re looking pretty great at this show of mine.

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And I’ll even add in a few of those fake, “No, no, don’t take my picture” type poses (note that perfect placement, wink, wink).

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But when the paparazzi isn’t around, I’ve got some other ideas for us.

This is a really good trick, because if people don’t look close, they might not even notice you’re only in one nostril.  The fact that I’m pretending to eat…and making it look like I enjoy it, is an added distraction to what’s REALLY going on.

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There is also the around-the-neck trick

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Or, around-the-forehead (blurry shot, but the dang paparazzi got it with her iPhone.  Those iPhones are dangerous for people in the public eye)

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Another good one is, just-over-one-ear

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At night when we’re sleeping, there are the platonic cuddles.

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And then, for those moments when the paparazzi just can’t seem to stay away, I’ve always got this little number up my sleeve (dad mentioned that next time I do this, I shouldn’t leave personal artifacts behind – hey, I’m not even two!).

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So see, I really think this is going to work.  We’ll show up at the doctor’s office and any public outings looking like we follow the rules, but when I’m running the show…just feel free to keep your distance, okay?

Thanks, love-ya (note:  that was not “I love you”, that has a very different meaning)

Owen

A note from the Editor:  As Owen calls out, his mom is very superstitious about these things.  It should be made very clear that the above thoughts are Owen’s thoughts and Owen’s alone.  Mentioning life without nasal cannulas at some unknown time in the future is not reason to be jinxed with an illness that would set Owen back further and extend his time on nasal cannulas…so blogger jinx, stay away!  Thank you.

A note from the Paparazzi:  It should me noted that after taking pictures of the evidence of Owen’s transgressions, I’m always sure to follow the doctor’s orders and replace the cannulas in his nose.  I’m one of those honest, paparazzi.  Paparazzi jinx, also, stay away.  Thank you.

A Wean, A Wean!

We’re posting a little late today – it’s been a busy day, but all in good ways.  This 75 degree weather is wonderful!

After what felt like the longest slide backward this winter, Owen’s Pulmonary doctor has given orders to reduce the amount his diuretic he is given by 25%.  This is the first step since January that is working towards reducing from his baseline Oxygen support.  We still have a long way until Owen’s warning to Nasal Cannulas can come true; he has to completely come off the diuretics before she will start weaning his oxygen from his current 1/8 liters per minute.  Then he will have to go to 1/16 and, maybe 1/32 before he’s off.  If all goes really, really well it will probably be a few months.  That timing puts us right back to cold and flu season and if he has another winter like last then we could be looking at much longer so I don’t want to get too excited, but it is a nice sigh of relief to be making progress from the baseline he was last at six months ago.

What do diuretics have to do with an oxygen wean? Children with Bronchopulmonary Displacia (BPD), the form of Chronic Lung Disease that plagues preemies, often struggle with edema, or water retention.  That excess fluid can get into the lungs making the lungs not distribute oxygen as well and can also create blockages that make breathing more work .  Diuretics help rid the body of excess fluids so it doesn’t collect in his lungs.  Because he’s been on diuretics his entire life, Owen’s body has become dependent on them so he will need to wean slowly, versus just stop in one fell swoop.  Before this new order from the doctor, Owen’s been on the same daily dose of diuretics as when he left the NICU and he’s nearly doubled his weight, so in reality he’s been weaning just by growing but this is the first active reduction is dose.

I have evidence that Owen still needs his diuretics, I recently woke up in the morning to find the full diuretic syringe next to his bed – I had mistakenly missed giving it to him the night before. Just missing that one dose impacted his day.  He required a neb, which he hasn’t been requiring lately, and I could see mild edema when I changed his diaper.  I’m not sure many others would have noted the mild differences, but if it’s noticeable to me after missing one dose, I know that his body is still depending on the diuretics to help his breathing.

If you want a fuller description of BPD, here is my favorite explanation in lay terms.