When The Lights Go Out

When you have a kid with a trach life is different. That trach becomes their airway. An airway that can be a bit complicated. And a touch scary every once in a while. Especially if your kid is on a vent. So as a parent you have to learn how to adapt.

One of our adaptations is our version of the ‘family bed’. Because Parker has a tendency to stop breathing at night, and because he needs a vent to insure that his breaths are deep enough to oxygenate his blood while clearing out the proper amounts of CO2 from their system. The vent helps Parker not to have to work so hard to breathe too.

During the night a trached kid on a vent is hooked up not only to the vent, but to an oxygen supply and, in Parker’s case, a feeding pump and a pulse ox monitor. This means that a lot of alarms can sound during the course of a night.

A Lot.

A WHOLE Lot.

But these alarms provide a very important service. They let us know if Parker is in trouble with his airway, his oxygen supply, or if he just needs a Neocate refill.

Because of needing to be able to hear the alarms, and because a trach and a vent can be such a tricky business to attend to, someone has to always be with Parker during the night.

That person is usually Reed. And this is where he sleeps:

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Granted, this arrangement ain’t gonna make the cover of Better Homes and Gardens, but it allows easy access to care for Parker during the night. And let’s just say that he requires a lot of care.

A Lot.

Reed insists on being Parker’s Night Nurse. He feels that since I am responsible for Parker’s cares, his preschool activities and therapies during the day that I need my sleep at night. Is that not the sweetest thing ever to do for me? Yet another reason why I love this man so much.

It’s all about peace of mind. I have known parents who have lost their precious children because of airway issues and they weren’t able to hear the alarms. It is easy for a tired parent to sleep through an alarm if they aren’t right next to it. Like I said, trachs are a tricky business.

And it is all about waking up to this sweet and healthy face each and every morning:

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The same sweet face that takes his pulse ox alarm off of his foot each morning KNOWING that it will alarm and let us know that he is ready to get up. And no, we don’t encourage him to put this in his mouth. He was just being a goofball for the camera.

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But isn’t he the cutest goofball you’ve ever seen?

About Tammy and Parker

Special Needs Blogger, and homeschooling Mom, heavily involved in advocacy for all kids with special needs in Utah.

Comments

  1. i know exactly how you have to live having a trach baby. we bought a bigger couch (bed) so i could have a “nice” place to sleep. oh well- i can live with sleeping on a couch forever if thats what it takes! what a good daddy- and mommy- sweet parker has!!!

  2. Most definitely the most adorable goofball I’ve ever seen! :)

  3. He IS definitely the cutest little goofball I have ever seen :) Just love seeing these pics of him! Reed is definitely a wonderful husband to do that for you Tammy! It is so beautiful that you two can work together and support each other through something so trying and scary. I know a lot of couples wouldnt be able to do that. Parker is such a lucky little guy!! As are you to have him! And I KNOW that even though it sucks for Reed to sleep there, you wouldnt want it any other way, than what is best for sweet Parky!!!

    Oh, did my package make it to you?

    Love,
    Amy

  4. Oh and it is so CUTE that he knows the alarm will go off so he uses it to wake you up! That is so cute!! What a smart little guy!!

  5. Katie says:

    Your dedication to your son amazes and inspires me.
    I love his face in that last photo! He’s like, “Can I get up now? I am behind on my daily quota of mischief!”

  6. WOW what a wonderful hubby – and what a sweet sweet boy!

    Tammy – I have a question and I could not find a link to email you…

    I know this situation is FAR different than what you have with Parker but you have been though soo much. My nephew, is going though a time right now – his skull has hardened before it was time (he’s only 9 months and this should not have happened till around 2) so now, Friday he is scheduled for a CT scan then on the 18th for surgery to break the bone apart – and all that entails – do you have any words of advice? My sister is freaking out, as are the rest of us – from what I read it’s somewhat a “normal” thing to happen, and his surgeon is one of the best in the business – but my God how do you get though it all? I am not sure you might have adivce but I thought I might ask!

    Peace to you,
    Jenn

  7. He’s the goofball that stole my heart. And thanks for all the Parky fixes.

    You and Reed are THE inspirations by which inspiring parents are measured. Thank you for continuing to share Parker with us though I know your lives are crazy hectic.

    Love you all.

    ox and prayers

  8. Wonderful and inspiring. I wish you BOTH a good night’s sleep sometime soon.

  9. absoutley precious!!

  10. It was really nice to catch up here.

    I too, appreciate that you share Parker with us.

  11. He sure is a cutie! You have an awesome husband. I remember those nights of having the feeding pump alarming. I can’t imagine how much more it is to have the other alarms. Some nights I thought I would go mad trying to fix the alarming pump.