Monday, 10 August 2015

Any way you say it... it's a long long time!

Half a year.  6 months.  26 weeks. 182 days.  It's been a long long time.  When we arrived in the hospital early in the morning of Feb 11 we were anticipating one surgery and a stay of 10 to 14 days. If things got a bit complicated due to Jadon's multiple issues, maybe stretching on to 3 weeks.  Boy were we wrong!   Here we are half a year later still in the hospital.

Jadon has had:
6 surgeries:
     - original Tetrology of Fallot repair
     - diaphragm plication
     - CABG (coronary artery bi-pass graft)
     - 3 irrigation and debridement surgeries (where they reopened his chest to cut out infected
5 days on ECMO
10+ weeks on a ventilator
8 intubations
1 Vascular access catheter
3 vacuum dressings
1  chest irrigation system
20+ sternal wound dressing changes and repacking
8 chest tubes
4  arterial lines
1 PICC line
1 internal jugular central line
15+ IVs
35 54 (nurse counted today) different medications
3 CT scans of his chest
1 PET scan of his heart
1 nuclear med MUGA scan,
1 cardiac catheter lab procedure
2 MRIs
countless echocardiograms, ECGs, ultrasounds, and xrays
What a trooper! BIG Hero
We are not done yet.   Jadon's chest wound has finally closed up.   He is slowly gaining strength.   The biggest challenge is still getting him enough nutrition. He is eating some, but his main source is still through IV TPN (total parental nutrition) and lipids.   At this stage, he will have to come home with IV nutrition or alternatively get the G-tube and fundoplication surgery that he was originally scheduled for early May.  As the medical staff makes a decision, we are still praying that his food intake will increase enough to do without either of the above.
 It has been a long and arduous journey.  Yet through strength not our own,  through the power of prayer,  support of our family and friends,  here we are.   It is only by God's grace and the support of those walking this journey along with us, that we are still smiling.  Big thanks.
Hospital Family Selfie!


  1. Oh my what a journey...six months is such a crazy long time!!!!! Absolutely LOVE the last picture of all of you with Jadon covering his mouth. Incredibly cute he is! <3 xo Pam

  2. And you're all still smiling�� "the steadfast love of the Lord never ceases, his mercies never come to an end..."