Payton Update

It saddens me that such a positive day in Payton's world is surrounded by so much loss with other families.  Not because we worry that our progress is shadowed, but more because we know the pain two families are dealing with and as someone who's living this journey, your only wish is that all these precious little ones could do so well.

We have been humbled many times in our journey and the last few days continue to keep us that way and remind us how incredibly precious life is.  For those of you not touched by tragedy or the fear of losing a loved one too early, we only ask that you hold your loved ones close and enjoy each moment life has to offer.

As for Payton, she's had an amazing 2 days (so far).  Yesterday they decided that her limbo stage was at an end.  Back to the chickent and egg problem, Payton was so flemmy yesterday that she needed to be suctioned often (the vent makes her flemmy).  The flem and suctioning was enough to keep her restless and grabbing at her tubes so they kept her morphine fairly high. 

The morphine of course is the root of some of her problems (too much prevents her from breathing on her own, too little she desats too easily).  Also, the morphine slows her digestive system therefore hindering her feeds as well. 

Her stomach continues to back up (and her reflux was working over time) and they put a thickner tube back in and suction.

Finally it was determined that they needed to reduce her morphine and try to extubate.  

So yesterday they started cutting her morphine and today, based on various tests we were waiting for the news whether they would try extubation.  When I arrived this morning she was on room air with a vent rate of 20 and breathing at a rate of 45-55 (thus 25-35 breaths a minute are all on her own).

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Ok, so its taken me a while to finish this post.  I got interrupted with a few things today - the BIG one being Payton is extubated!!

Shortly after lunch she was extubated and I almost missed it thinking I had plenty of time to take a work related call.


So now she's got this wonderful contraption on her nose with relatively little nose prongs (not like the vent on her mouth and down her throat) - called a Bubble CPAP.

Her feeding tube is now down her throat so we haven't really 'lost' any tubes but they are different and they are a huge step forward (and though the vent is still on standby in the room we're having a mini celebration regardless).

She fought the change...in fact she downright hates it so far. She hasn't complained like this since she was born.  Her tiny hoarse little cries are a wonderful and welcome sound which will get louder and louder as her throat gets better from the extubation.  She does desat when she cries so I hope that she does get used to it soon.

I'm just hoping she can remain calm enough for her blood gas that they'll take to ensure she's getting enough oxygen on the CPAP.

We'll also know more as the day progresses to ensure she's not getting too tired breathing so much on her own.  I hope she's ready for this next step. 

AND if all goes well they'll be removing her lines from her belly button.  We've been told this is what is limiting us from holding her so it could be that we're holding her in the not too distant future.  But for now we're just going to focus on her breathing and hope that she tackles this challenge with as little issues as possible.

Here's a picture of her new look.  As Dwayne mentioned, someone needs to tell her that "less is more".  No pressure though...

Here is a rare treat - a bare face.

A full body shot.

The new look!