23 MayJayden’s complex heart

18471842_10158560088420648_264367035_o - Copy

Jayden travelled to Shanghai for surgery in April, with the support of the wonderful Baobei team. His recovery was a little bumpy to begin with, but eventually he stabilised and even started to enjoy the time away with his devoted ayi. His heart condition is super-complex, so we always knew one surgery would never be enough. But we hoped a series of operations (at least three) could offer him an active, busy life with a lot of years to enjoy. We expected to fall into a predictable pattern with him: surgery, recovery, healing … home for R&R …. then repeat …. as often as necessary until healthy.

IMG_4031

Except – it doesn’t always work that way. We now understand that Jayden’s heart is even more complex than we first thought. His surgeons don’t believe his chances of surviving  another procedure are good. They have suggested that further surgery here is too risky.

18339439_10158537986005648_2029171036_o

So now, we are adjusting to a new reality – an outcome that doesn’t match with our plans. Jayden’s long term prognosis isn’t good. His circulation is poor – you can see it in the bluish tint to his lips and fingers. His heart is going to have an even tougher time as he gets bigger and more active. Currently we are monitoring his oxygen levels and adjusting medications to make him as comfortable as possible.

18338865_10158537986140648_798318137_o

His surgeons have been open, direct and kind, and they have carefully documented all their findings. We are grateful for their honesty, and continued support in maintaining Jayden’s quality of life. We are focused on making every day wonderful for him, but not giving up hope either. It’s possible that Jayden could be adopted by an overseas family. It’s possible that somewhere in the world, a surgical team may have seen anatomy like his before.

18452047_10158560087695648_1161996225_o

Miracles are always possible, and we will never give up hoping and seeking – will you hope with us for Jayden’s miracle?

Tags:

Donate

Butterfly Children’s Hospices wouldn’t be able to do the work it does without your support. Please consider donating to help this invaluable cause to continue changing lives.

One comment

  1. Carole on: May 23, 2017 at 4:12 pm

    Hi Fiona,

    Is there a way to get help flying him here to have medical care for his heart. There are multiple pediatric care for hearts. Please email me!

Add a comment

Your email address will not be published. Required fields are marked *