Thursday, 18 February 2016

Home Sweet Home!

Yes, Jadon is home.  After slightly more than a year as a patient at Sick Kids Hospital, he came home Tuesday afternoon.  We had been transitioning Jadon home over the last few days.  He came home for a sleepover Thursday and spent the day Friday.  He went back to the hospital in the evening for his antifungal IV medication.  He spent the day Saturday and Monday at home as well.  Sunday was spent at the hospital with a friend watching Jadon so that Sara and I could spend a little bit of 'us' time on Valentine's Day (the older two kids insisted we go out for lunch and leave them to care for the two siblings at home :-) )

Tuesday was the big day and he's been doing relatively well.  The transition to home was in part because the night nursing had not been arranged yet.  We have nursing care overnight to give Jadon his IV med, his continuous g-tube feeds and to keep an eye on him as he sleeps.  The first few nights have been quite interesting as we iron out some kinks and get settled into some sort of routine.  Hopefully over time things will normalize and the two of us will be able to get regular sleep.  The days are busy sorting out medications and appointments and trying to get used to having a mini-hospital room set up in our living room.

All the kids are thrilled that Jadon is home.  The siblings love playing with him and entertaining him as they are rewarded with one of his huge smiles!  Jadon is excited to be here and has recently learned every one's name and so loves to call out for whichever sibling is not around.  Jadon is scheduled to start an intensive daily rehabilitation program at Bloorview Hospital where they will focus on occupational, physio and speech therapy.  This is in addition to weekly visits to Sick Kids and our local pediatrician.  So, yes it's better but will still be very busy!  Despite the challenges, it's wonderful to be able to be together as a family once again!

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!