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.

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.