day 106.

It feels like time has sped up since Jackson’s surgery. We spent a long time in limbo, in this weird waiting time between needing surgery but not needing surgery, being ready but not being ready, needing a surgery slot but not having space. Every time we started moving forward we would end up moving back. So, so far back.

Then, it finally happened.

Jackson had his full cardiac repair on December 21st and it has been amazing to see the improvement since then. His color has brightened, his oxygen levels have gone up, and he just looks more like him.

Our little man has spent the majority of his life on a ventilator due to his Pierre Robin Sequence, a combination of a small jaw, a cleft palate, and a tongue that just doesn’t want to sit where it’s supposed to. But, next week, now that his heart is repaired, we are going to give him one last shot to get off of it. One more chance to try out breathing on his own without the help of a machine or a device or me forcibly holding his jaw forward which has happened more than once.

When babies are born with PRS, their jaws often ‘fall back’, pushing their tongues into their throat and causing them to block their own airway. There are a few options for treatment, but the most common are time – allowing the jaw to grow – and a tracheostomy.

Yes, a ‘trach’. We almost ended up there very early on when our delivery team could not intubate Jackson at birth. It would have been less than ideal; an emergency tracheostomy on a new born baby wasn’t what anyone wanted to do. And we were able to avoid it, at least for then, and gain the title of ‘critical airway’, affording us a permanent spot in the ICU and a team of doctors any time we had to move from one room to another.

But now, we’ve been on a ventilator for almost two months and have been sedated more than we’ve been awake. Jackson hasn’t been able to be sat up or fed by mouth or, worst of all, held in over 11 weeks. So we find ourselves at a crossroad, at a ‘one final chance’ situation to remove his breathing tube and see if he has grown enough and can control his tongue enough and if he can breathe on his own.

If he’s ready or if he’ll fail.

If Jackson is taken off the breathing tube and can’t manage on his own, it’s called a failed extubation. They’ll say the procedure failed. They’ll say he failed.

Let’s be real. That amount of pressure isn’t fair for someone who just found out they have knees.

This is something both Zach and I have struggled with, coming to terms with the fact that Jackson may not be able to manage on his own and may need the trach, something we have been actively trying to avoid since birth. Something that is seen as a failure instead of a success, as a step back instead of a step forward.

While waiting for the bathroom recently, I ran into a familiar nurse who stopped to ask about Jackson. How was he? How was surgery? Any word on the trach? Then she said something; something that really put it all in perspective:

“A lot of parents are afraid of the tracheostomy and I understand. We don’t paint the best picture of life after a trach for babies up here. We consider it a failure. But kids thrive on trachs. They can start interacting and developing and just being babies. Think of it another treatment. We give medications to help with blood pressure – this is the same idea, just for his airway. If it’s what he needs, than it’s what he needs”.

And, it’s true. I have been afraid of the tracheostomy, of what it means long term and what it means now and what will happen if he has it. Of whether or not it will hurt or if he will be angry with me years down the road when there is a scar on his neck that he has to explain to new friends he meets on the playground. Whether its permanent or, as we have been told, only temporary until an undesignated time at which he doesn’t need it any more.

I’ve been afraid that it means we failed.

So, I decided to rephrase my perspective.

If he goes in on Tuesday and the extubation doesn’t happen like we want it to, it’s not that it went wrong – it went right for Jackson.

If he isn’t able to manage breathing without his tube, it’s not that he can’t breathe on his own – he just needs a little more support until he can breathe on his own.

And, if he does need a tracheostomy, be it on Tuesday or after that day, he didn’t fail – he succeeded in showing us what he needs.

So, here’s to success next week and to rephrasing our perspectives.




3 thoughts on “rephrase.

  1. That is exactly right Ashley! I love reading your blogs and you are an amazing mom… jackson is so lucky to have you and you are so incredibly lucky to have Jackson.


  2. I get what you are saying. Just the word “trach” makes most people cringe. But if this is what Jackson needs to thrive, then I am all for it. He has so many people who love and support him! Family, Friends, Nurses and Doctors! Why not give him all the support he needs! Love this little guy to the moon and back!


  3. Pingback: trach time.

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