Friday, 25 December 2015

I'll be Home for Christmas

Grandmaman optimistically bought Jason these pyjamas for Christmas and today, just for the day, it came true!
We were off to an early start and met Santa on our way out the door.  Sick Kids is amazing... we got gifts for our kids, activities throughout the week, a Christmas dinner and much more...
Greeting Santa on our Way Home!
Jadon sporting his toque given to him by a Ronald McDonald Room worker
The kids absolutely loved having Jadon home for the day.  The older two ran outside to greet him in their bare feet.  When I asked them what they were doing, they cried "Dad, this is a once in a year event!"
The cousins
Lilin took a picture of her favourite ornament... one celebrating her adoption.
It was so nice to see Jadon walking about and playing around!
Taking a nap after the festivities!
We were able to enjoy the day with family and friends, have a good turkey dinner put on by Sara's parents at our home, and some play time.  An exhausted Jadon is now sleeping peacefully in his room back at Sick Kids.

Sunday, 13 December 2015

More steps in the right direction

This has been another eventful week.  It has been determined by the cardiac team that the changes seen on the last echocardiogram indicate that the improvement in Jadon's heart function is substantial and that his heart is not really a big issue anymore.  It seems likely that the cardiac artery bypass graft (CABG) surgery performed in June has had some effects.  We were told it may take up to 6 months to show improvement and here we are!  His function has moved from moderate/severe dysfunction to only mild dysfunction.  As a result, late this past week he was transferred out of the Cardiac critical care unit (CCCU) and into the Pediatric intensive care unit (PICU).
The three bros sharing smiles!
On Friday they removed his replogle (the tube providing constant suction) to see how he would be able to manage his secretions, given he has been on the prokinetic drug for 2 weeks now.  He is still being suctioned every 3 hours but is doing well.  We are hoping and praying that he will start to be able to fully manage his saliva on his own.  The plan is to transfer him to the general pediatric floor as they continue to manage this.  He is in really good spirits and has been pulling himself up in his bed and even taking a few steps - something he really hasn't had the strength and energy to do for several months.
Standing in his crib!
We are once again cautiously optimistic that he may finally be on the mend.

Sunday, 6 December 2015

Heading in the right direction once again!

Well it has been another eventful few weeks.  Jason has been in the CCCU for two weeks.  He has gone through stages of extreme lethargy, to discomfort to agitation.  He has had days and nights of almost constant sleeping to days and nights with hardly any sleep. He's gone through another round of multiple medications.  He has been NPO'ed (no food through mouth, or for him, gtube), and had feeds started once again.  He has gone through intessusception and pancreatitis.
Yet here he is once again smiling.  The last few days have been pretty good.  We've seen the rascally Jadon come out again.  He's squirted several staff members with water from syringe during rounds.  He's taken to playing on a mattress on the floor, even napping there at times, prompting the head of the ICU to take his picture and send it to the CEO as 'proof' that they need more critical care bed space at Sick Kid's! ;-)
We are currently waiting to see how the new prokinetic drug they started about a week ago is working to increase his esophagus motility.   If this works it would be great.  If not we are likely looking at another surgery to undo the fundoplication.  We are desperately praying that this works and we can continue heading in the right direction.