Wednesday, November 17, 2010

An Ode to a Nasal Cannula

Here is that highly anticipated, highly dreamed of, most exciting post of the year! (for me. I realize for you this is probably just another boring blog post read...)

Our big announcement? Just got a call from the sleep Center and Chubbs scored a 97% on her sleep study
...which means......
(drumroll please)

NO MORE OXYGEN!!!!!

We have been on oxygen for the past nine months. She was born on February 6th and has been on oxygen every second of every day even after we came home from NICU (yes, this included grocery shopping with an oxygen cylinder) via low flow nasal cannula. On May 11th, we went to Boston for Chubbs' first heart surgery, which we had anticipated would mend her pulmonary hypertension and take away the need for oxygen to decrease her pressures.

You can imagine my dismay when we left Boston with a scar, a baby in lots of pain, and only the promise that we could maybe take her off for a couple of hours at our discretion every day, but it would be best if we didn't.

When we arrived back in VT, her cardiologist told us that we shouldn't take her off it at all and was upset that we showed up at the appointment without the nasal cannula.

I stood up for what Boston had told me and refused to give up our precious few hours a day. That meant that I could actually take Addison places without having to haul around the cylinder as well. It is a lot harder to do than it sounds. It also gave Addison's cheeks a break from the tape.

This continued all summer and early fall. Some days we kept her hooked up to the oxygen machine all day, others we would take her off for an afternoon or morning to go out and then hook her back up when we came home.

We were made promises- next appointment, maybe if her pressures are lower...maybe, maybe, maybe....

Honestly, at times I felt pushed around and that no one really wanted to make the call to take her off so no one did. (note: at this time her saturation levels were fine. They were using it purely as a drug for the pulmonary hypertension.)

This has been hugely frustrating to me....yes, I would even use the word....complain....guilty.

I appreciated that it saved my daughter's life, but then when she became less critical, I just wanted to enjoy her like any other baby rather than always worrying about her strangling herself with the cord, or remembering which way I entered the room so that I could exit the same way without getting tangled up in furniture, or tripping on the cord repeatedly, or never able to take her farther in the house than her leash would permit...

Here's the machine that we spent waayyy too much money on each month in order to keep "fresh" oxygen in our house...ha.
Last month we got the call that she was going to have her second surgery to close her ASD. They told us that if it was any other baby they would just let it close up on its own over time, but they were hoping it would lower her pressures which were "no better since week three of life". Lovely.

As you know, they were able to close it via catheterization and we were then were all excited to hear the anticipated "no more oxygen" (seriously, I used to have dreams about the doctors telling us this), but instead they said...."now just oxygen at night."

ARGHHHHH!

They said that the wanted to see if she got at least a 93% on her sleep study and then she could come off of it for good.

Our sleep study had been scheduled since June, so we went in at the end of October....and it turned out to be a meet and greet and then they had the nerve to suggest scheduling the actual overnight study several months away.

Are you kidding me??? Why is it that sometimes medical professionals don't get it? Just let us stop having to hook tape up to our little daughter's soft cheeks every day and watch her get closer and closer each day to strangulation by taunting us with ripping the cord off and wrapping herself up in it.

After applying some guilt on the doctor about us needing to purchase tickets for Thanksgiving so that my dad could meet her for the first time, we managed to get an appointment for last week. (I was NOT flying with oxygen!)

End of story??They all lived happily ever after....

WITHOUT EXTRA OXYGEN ASSIST and NO MORE NASAL CANNULA....and hopefully no more cuts on her cheeks because of the tape. I am so, so happy. I feel as though I have waited for this day for years instead of merely nine months. It feels like I have waited for this day my whole life. (Let me me dramatic, it comes with the territory) I am feeling the wild need to celebrate.

Too bad I have a band concert tonight.

I will spend the ride there and back deciding on a way to celebrate because I think this is necessary.

This has been a long road....So unbelievably, uncontrollably, giddily excited. Seriously, my hands are shaking while I type this.

In conclusion...here is Addison's Ode to her Nasal Cannula (follow up to her Ode to her Mic-Key Button)

Dear Nasal Cannula,

This is a somewhat sad post because

you are my friend

that has always been there for me

and we've had some really good times.

But Mommy says that I don't need you anymore
and I listen carefully to everything that she says

because she is the one who feeds me....after all, the nasal cannula appetizer needs to be followed by a formula feast...

I like to have you near, but I didn't always like to have you in my nose

so I worked on my fine motor skills by pulling you off

and then just holding on to you...my dear sweet friend.

At first when I heard that you were not going to be there anymore, I was really upset

but then Mommy told me that I was going to make new friends....and I got excited thinking about that.
So, I guess- thank you. Thank you for saving my life and for allowing me to live at home with Mommy and Daddy while still continuing my medical care. Thank you for helping me get better. It feels good to be able to breathe on my own.

We'll always have a special thing for each other....oh sweet nasal cannula.

You were, after all, my first love.

I have decided to replace you with more puffs.

So sorry. (if it helps, they are sweet potato flavored)

Love,
Addison Chubbs McPhee

14 comments:

  1. AAAAAHHHHHHHHHHH!!! SO exciting! Congratulations and way to push! I keep thinking of that post after the button came out and how Addison comforted herself by holding the oxygen tubing....She really will have a chnace to meet many more friends now =D Hope you have a great trip to see the family.

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  2. WooHoo!!!! Bye, bye oxygen...HELLO freedom!!!! I'm so excited for you guys and I agree a celebration is IN ORDER!!!

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  3. THIS MADE MY DAY! YAY! I was just dreading reading a post from you this week that she had to keep it... The pics of her with that thing everywhere but in her nose - h.y.s.t.e.r.i.c.a.l.
    Loud laughter while looking at those.

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  4. A big celebration indeed--this truly is a milestone. A milestone that reminds us all of what a gracious and sufficient God we serve. It's been a wild ride Mcphee and it only promises to get wilder.

    Love

    (as you call me)
    dah dah dah dah dah.......

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  5. That is wonderful news. That is definitely worth a celebration. Make sure you go all out. The pictures were very cute and hilarious. Now, she can go to lots of places and meet lots of new people. I hope your family has a wonderful and safe trip to Wisconsin. I'm so happy for you all. Oh how I wish the miles were few so we could get together. This is from your cousin, Rachel. (This stupid thing wouldn't let me type my name.

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  6. Yay! God answers prayer, just not in our timing. So excited for you and Addison!

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  7. I am Sooooo excited for you guys!!! Great post too Deanna, when you described everything like that I really understood what a pain in the ass that must have been for all these months!!! Ha ha...LOVED the pictures, Chubbs is going to be one happy little girl now!!
    I am going to celebrate tonight with a glass of wine dedicated to you and Chubbs!!

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  8. Grandma and Grandpa SanfordNovember 17, 2010 at 9:47 PM

    We are so happy about NO more nasal canula! We're rejocing here in Wisconsin with you! Now hurry and come see us! Love you all!

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  9. This is wonderful news, Deanna! I hope that you all enjoy your trip to Wisconsin. I know that Addison's arrival there is much anticipated. I'll be thinking about you guys.

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  10. SOOOO happy DJ! What an answer to prayer! The best part of it is not having to rip/peel/scrape that tape off her poor little cheeks! And I can't wait to see you and my little Chubbs in December!!!

    Andrea

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  11. Yay, yay, yay!! I am so glad to hear that she of FINALLY off the o2! Claire was on it for about 2 weeks after RSV and about 2 weeks after OHS and that was a pain, so I can't imagine 9 months...

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  12. Dear Deanna, Aaron, and Addison--
    Finding out you could go off oxygen, Addison, was the best news I got for my birthday! I love you.
    I am going to Boston for Thanksgiving and flying up on Tuesday and will be there through Tues. I am pretty existed.
    I love your blog. thanks for sharing.
    Love and prayers, Doc Larson

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  13. CONGRATS!!!! i loved the day that i could throw that boogie cannula in the trash! :) and i am sure you are even more overwhelmed than i was! YAY for progress!!

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  14. WOOOHOOO, Addison!!! So happy for you and Mommy!!

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