Wednesday, 10 February 2016

An Anniversary we wish didn't have!

Well, here we are, 365 days after bringing Jadon to the hospital early morning for his first OHS (open heart surgery) to repair his Tetrology of Fallot.  He is still at Sick Kids.  He has gone through a tremendous amount.  If you had told us what the last year was going to be like, we would not have believed you, yet here we are!

In addition to everything Jadon had gone through as of Aug 11: 6 months in the hospital, this is what has happened since:

1 surgery (fundoplication and g-tube insertion)
2 cardiac arrests
4 more CCCU admissions
1 endoscopy
3+ intubations
multiple bronchoscopies
1 fundoplication dilatation
4 g-tube size changes
1 g-tube advanced to gj-tube in IGT
intussusception (bowel telescopes on itself)
gj-tube back to g-tube
1 mickey (replace g-tube with button)
2 bouts of pancreatitis
7 weeks on a replogle tube (continuous suctioning)
1 PICC line change
1 CT scan of his chest
1 MRCP (special liver/pancrease MRI)
10+ new different medications (bringing his total to over 64)
1 medication is restricted and only available through the Special Access Programme
learning to walk 3 more times
multiple more ultrasounds, x-rays, echocardiograms, EKGs

Through all this, Jadon has been absolutely amazing.  He is such a happy little guy and worms his way into the heart of all his health care practitioners.  For the last 2 months or so we have been on a general medical pediatric floor, so Jadon had a whole new set of nurses, doctors and others to charm.  It did not take long!
He is taking a little bit of food orally now
Colouring in the library at Sick Kids
I'll say it again as we have countless times... we are hoping for a homecoming very soon!


  1. Wow, so glad he has your family as his family. Hope you get to return to an at home family life soon.

  2. Oh my goodness! Not a journey for the faint of heart; we are praying you are all reunited soon!!

  3. Praying you get that homecoming VERY SOON and for good. Brave boy... brave parents.