Day 9: Crushing Goals

Today has been a BIG day for little pickle pants!


For starters, he got a very special visitor all the way from The Northwest Territories! Auntie Sam, or as we like to call her ‘Slip n’ slide’ came for a visit.


Jaxson was totally in love with her! AND she brought a VERY special present for him.  Sam’s mom made a magnificent ‘stained glass’ quilt for him. She even researched Down Syndrome and incorporated the DS colours of blue and yellow into the blanket. What an amazing, thoughtful gift that we will always cherish!


Bright and early this morning Jaxson got a post op follow-up echocardiogram. The septal repair looks really good, and the mitral valve is still showing a mild to moderate leak. However the blood flow is REALLY good in the heart and the cardiologist is very happy with how it looked. So the game plan is to have regular cardiac workups throughout his childhood and see where that takes us.

Another HUGE recovery milestone for pickle is his JP (drainage bag) is slowing down substantially. Doctors are hoping to take it out tomorrow and possible discharge THIS weekend!!!!


Jaxson also unintentionally got rid of his last IV today 😛 As it was unable to be flushed, so therefore we got rid of it!

And now for the BIGGEST accomplishment of all…..


Jaxson has been off of the oxygen ALL day today and look at his SP02 (middle number in green) it’s 98%!!! That is HUGE! Tonight he will be left off the oxygen, and as long as he doesn’t have any major de-sats throughout the night then we are OXYGEN FREE!!!! The thought of not having oxygen tubing strewn around the house, and hauling out the tanks with us is such a great feeling. So fingers crossed for this little man to get through the night 🙂


Tonight should be pretty low key for us. I think we both plan on staying tonight as his NG feedings are truly a pain in the ass and take forever. So it’s nice to be able to switch out feedings with each other. That way we are only both half zombies during the day 😛

Hope everyone has a great weekend!!

3 thoughts on “Day 9: Crushing Goals

  1. My fingers and toes are crossed that Jax’s oxygen levels stay where they should be. What an exciting day he has had.


  2. Praying his levels stay. I don’t know you ladies. Feel as though I do. What a beautiful family unit you have,your son is adorable. Thanks for sharing your family..


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