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.

Cold and Flu Season Dread

I don’t know if panic is exactly the right word…okay, panic is the right word… I have to be honest, I’ve really, really been struggling with the thought of being stuck in our house for another Cold and Flu season.  Eight to nine months of only leaving the house for doctor/therapy appointments and for dropping off and picking up Kellen for school.  The closer it gets; the more the weather changes and the more I see parents posting on Facebook about their kids being sick, the larger the pit in my stomach grows.  Dread, panic, MOODY and anxiety all come to mind.  Seriously, as I type this, tears run down my face.  I’ve done this cold and flu season winter thing before and let me tell you, the very nicest word I can come up for it is, it SUCKS!

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Owen’s Open Letter to Nasal Cannulas

Dear Nasal Cannulas,

It’s hard to believe it’s been a year since we met.  I was so excited to meet you.  I had heard about you.  Everyone said how gentle and kind you were and that you gave so much freedom.  After a nine weeks with a couple different ventilators, I needed someone who was not so oppressive and would allow me to more freely express myself.  Those ventilators were so… invasive and controlling.  They literally made me sick a few times.

When we met a year ago today, you were exactly what I needed.  Compared to my last couple relationships you were so gentle and kind and gave me the freedom to snuggle with my mom and dad and finally, my throat stopped hurting.  Around you, my mouth wasn’t dry and you didn’t force me to always have my cheeks puckered and ready for a kiss.  Your tapes were so much softer and didn’t bruise my skin.  Here’s a picture of us on that first day we met.  We looked really happy together.  Content actually.

Owen at 33 weeks, his first day on the Nasal Cannulas. June 22, 2011

When we first met, I never imagined we’d get this serious.  I thought you’d be a few month fling – a rebound, if you will.  But here we are a year later.  You’ve helped me in numerous ways and I’ll always be thankful for what you have given me.  I’m really starting to come into my own and much of that is because of you.

With all that said, it’s a little hard to say this, but I…uhm…it’s just that…okay, here goes…I don’t think you’re the one.

Yep, I’ve said it.  I’m just never going to marry you.  You’re welcome to stick around until we get everything with my meds straightened out, but after that, I think we should go our separate ways.  I know what you’re thinking, I went back to the ventilator a few times after we broke up, so you still have a chance.  Well, please don’t take this the wrong way, but I don’t want to ever see you again once we’re through.  I think we should just, you know, make a clean break.

“Why?” I am sure you’re asking.  Well, it’s not all you, it’s partly me too.  When we met, I was still pretty young – too young, some would say.  I just didn’t understand what I was getting into.  I’ve learned that although you’re nothing like my past relationships, you still are pretty oppressive.  Your tapes have started leaving red marks on my face and when your cords get caught up you yank my head.  (I know you blame my mom for that, but Noooo, she told me, it’s your fault and everything mommies say is right.)  And now that I’m starting to roll, you’re always in the wrong place.  Anyway, you’ve come with a lot of baggage and I just don’t want to deal with it all for much longer, so I think you should start looking for a new home.  I’d suggest it be far, far away – Siberia maybe, because, really, I don’t think we could ever be friends after all that we’ve gone through together.

One last suggestion for your next relationship – you’re not a bad teething chew toy.  Maybe, you should consider that angle for the future.

Owen finding a more appealing use for his nasal cannulas

Sincerely, Owen

PS – I am sorry for the public break up, it was a Big Country, KC Cowboy named Franklin who gave me the idea.  He’s got a couple really cute daughters my age, so I thought I might want to listen to start showing some respect in case I get to meet these beauties one day.

Home again

Owen got to come home Thursday afternoon.

I have to pinch myself his breathing looks so good!  He’s on low flow oxygen for the first time in two months and is doing great!  I think he’ll be down to his baseline 1/8 liter by the weekend.  Such a nice turn around from last weekend when he was having some breathing done for him.

In general, Owen’s had a good recovery from this illness, but the difference between Wednesday and Thursday was especially significant and that’s because there has been a big change in the inhaled medication Owen is getting.  Wednesday during rounds, the Pulmonolgist had a new hunch and asked for imaging of Owen’s airway as he breathes.  The hunch was confirmed and Owen has been diagnosed with something called Tracheomalacia (if you pronounce the second half of the word like the country Malaysia, you’ll get really close to right).  With tracheomalacia, your trachea (aka Windpipe) is not as rigid as it should be and can collapse during the breathing process.  A properly working trachea should only dilate and narrow slightly.  Collapsing, although temporarily, obstructs his airway and makes even more work for Owen to get it back open.  Collapse is especially a risk when Owen is working hard to breath, coughing or crying – all things that are common when he gets a cold, even the mildest cold.

How Owen has come to Tracheomalacia is unknown, he could have been born with it (very rare) or he could have acquired it due to all the ventilation and repeated infections (extremely rare).  More importantly, albuterol, the asthma inhaler that is typically used for  people with chronic lung disease and suspected asthma, relaxes the muscles around the trachea – actually making him collapse more easily.  Between the suspected allergies, RSV and this latest cold, Owen’s been getting Albuterol 4-12 times daily for the last two months.  When the airway collapses, Owen needs more positive pressure through high flow oxygen to help him keep the trachea open.  Mystery of the extended stay on high flow solved!

It’s really quite shocking to see how much Owen is improving since coming off the Albuterol.  It is a little frustrating to know that we were making things worse for him these last couple months, but it’s hard to throw blame.  I’d be willing to bet Owen has had between 75-100 different doctors (residents through specialists) listen to his breathing in his lifetime and it’s never been caught.  For one thing, it’s a rare disorder so not top of mind and Owen’s got a lot of diagnosis/suspected diagnosis going on with his lungs, so it’s not always easy to tease out which ailment is causing which symptom.  He has what is considered sever BPD, which basically means that his lungs were damaged from being on the ventilator and Owen spent a longer time on the ventilator than even the typical 24 weeker.  He also is considered to have asthma, which is a very rare diagnosis/suspected diagnosis at his age (you can’t actually test for asthma until 8-10 years old by which time Owen may outgrow it), he’s had multiple respiratory infections that weaken/temporarily damage the lungs, also, his allergies are a factor in his respiratory status and now we have one more known variable in tracheomalacia.  With all of that going on inside those tiny underdeveloped lungs, I can’t really fault the doctors for not thinking of this rare problem sooner.

I am happy that we know so we can start giving him treatment that will help, not hurt, his progress.  I’m also a little wary because separately Asthma and tracheomalacia tend require hospitalization for even small colds.  Owen has both.  I now understand why, even though we lived in an absolute bubble this winter, we still had more than 40 hospitalized days due to respiratory infections.  Next winter the bubble is going to have to be even tighter!

Worrying the unknowns of tomorrow is not how I want to end this post.  Let’s celebrate all the great work Owen is doing.  He’s making some great strides in standing.  Up until the last few weeks, he would not bear any weight on his legs and lately he’s started doing it!  Makes my heart smile and it looks like he’s pretty proud too!

Standing in PT with Early Intervention

Owen standing for Early Intervention Physical Therapist, Nancy