Wednesday, 9 March 2016

A little Rascal, and we are loving it!

Yesterday marked 3 weeks of Jadon being home!  We are so thrilled and thankful that he has been able to be at home and we have been able to spend time being a 'normal' family once again!  Our new normal however is quite different than what we've had before.

While Jadon is out of the hospital, a lot of the hospital is here at home with him!  He is on continuous oxygen and nearly continuous feeds.  His SATs are monitored overnight and he gets his antifungal medication through IV nightly.  He has 20 medication doses daily.  His PICC caps and dressings must be changed weekly using sterile procedures.  He has daily appointments.  He attends the SODR (Specialized Orthopdic and Developmental Rehabilitation)  program at Bloorview Children's Rehab Hospital. He has occupational, physio and speech therapy.  This is a daily program with breaks for Sick Kids or local Pediatrician appointments.  These daily outings involve packing the oxygen tank, the feed bag and pump, the 'emergency safety bag' (contains suction supplies and machine, oxygen saturation monitor and respiratory emergency supplies, feeding tube emergency dislodgement supplies, and PICC line emergency supplies), as well as a diaper bag and oh yeah, bringing Jadon along also!  We have night nursing care to monitor him overnight from 11pm - 7am.  The nurse administers the IV med, maintains his night feedings, and monitors his overall health and need for suctioning.  We have had to help train the nurses but things are going more smoothly now.  It is an absolute Godsend having nighttime nursing support because this means that we usually get a reasonably solid night's sleep. With full days, uninterrupted sleep is so helpful.
8 o'clock morning meds!
Jadon pointing out a 'BIG' truck on one of the many trips to an appointment
Despite all of the challenges, we LOVE LOVE LOVE all being home together.  It is wonderful to see the children all playing together and to see the leaps and bounds in Jadon's development as he is continuously showered in love!  He is a real rascal but we love to see the spirit and energy.
The two Littles!


  1. Oh my goodness! This is amazing to see. Jaden looks so much healthier ... I know there's still a lot on the go, but wow! Looks like prayers are being answered! Lauretta

  2. What an encouraging update!! So happy you have found a new normal that you are loving. I know you are not loving all of the new normal, but loving the improvement in the quality of life it brings. Jadon is looking great. Hope to see you soon xo Love and prayers

  3. Wow what a tremendous accomplishment to finally have him home sweet home! What a story. So thankful for answered prayers and continue daily knowing there's still more need,..aunt Carole xox