Friday, March 21, 2014

Full-Day Weaning

We're all feeling a new-found freedom in this house.  Having Isaiah off of the C-PAP and without the tube hanging off of his head has been amazing.  I'm pretty sure he feels the same way...

Oh the joy in this kid's face!

Isaiah's doing amazingly well.  His oxygen saturation level and heart rate have been just perfect.  His respiratory rate hasn't increased one bit.    

I still weigh Isaiah at home.  Instead of once every other day, I weigh him every Monday and Thursday.  Isaiah had some belly issues over the weekend and the scale showed that with the loss of a few ounces.  I was a little concerned that maybe it happened because he's working harder to breathe now...but once he was over the belly issues, he gained back a few ounces by the time I weighed him again on this week.  

That trend of "gain a small amount, gain a small amount, gain a large amount, lose a small amount" tends to be his normal...but I couldn't help overanalyze it this week and worry it's because of the wean. We're so glad he gained a few of the ounces back.

I'm fine, mom, chill out!

He LOVES being tube free.  He moves his head, actually his whole body, so much more when it's off of him.

To make things easier on his skin, we leave the the tape, called Duoderm, on his cheeks.  It protects his skin when we remove the cannula everyday; that gets held on with a clear tape called Tegaderm.  We do remove the Duoderm every 3 days or so to change it out.  Every so often, we've left it off all day to give his skin a nice break.  We kiss his cheeks ALOT those days.  :)

I love that we're not limited on where we can take Isaiah in the house.  He can hang out all the way across the room from his machine.  I've even been bringing him downstairs to my crafty room and the family room.  I'm always sure to have his travel machine near by, but it's nice that it's just a lump in the room, instead of attached to Isaiah.

Isaiah has also been off of his C-PAP while napping during the day.  His oxygen stays steady at 98-100%.  It gives us great confidence that he'll be ok overnight without it as well.

Here he is napping while the C-PAP is OFF.  The top red number is his oxygen saturation level and the bottom green number is his heart rate.  They are beautiful numbers.

Tonight begins the 24 hours/7 days a week wean.  Fingers crossed that Isaiah handles it just as he's been.  Once he's machine-free for a week, we'll be scheduling a sleep study at DuPont.  Once it's confirmed that he's doing well, we'll be able to close this chapter of Isaiah's book.  

We're so ready; ready to say goodbye to the machines....ready to say hello to our fabulous future.


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