Wednesday, 6 May 2015

A surgery date... but more diagnostic tests first!

Jadon has been gaining strength over the last few days.  He has had a good week.  His mile-wide smile is back and so is his teasing personality.  He really enjoys physio and occupational therapy.  He has been going down to the gym - the Tie Domi and Friends Rehabilitation Clinic.  He rides little bikes, bowls, plays with bubbles and other toys.  He even stood up on his own for about 3 minutes on Tuesday!

On the feeding front, he is still proceeding slowly.  He can take small amounts of thick liquids/thin purees.  He really enjoys ice cream!  He took a couple of bites of noodles with Alfredo sauce for supper yesterday.  He still has significant reflux, and his surgery for the fundo-plication, hiatial hernia repair and G-tube insertion is currently scheduled for Friday, May 15.  There is an anticipated at least two week recovery, given the state he is in.

The surgery however, may need to be pushed back.  Today the medical team talked to us about the function of Jadon's heart.  We knew that his left ventricle in particular, was not working well.  He is on heart medications to help his heart adjust to the new normal.  We were told today that it is possible that there is a physical cause to the malfunction.  There may be some damage to one or more of Jadon's coronary arteries.  So... tomorrow he is scheduled to go in to the cath lab for some imaging to see if they can identify any problems.  If they can... it would mean another surgery to repair the problem.  If they can not identify any specific physical issue, he will continue to be treated with the heart meds and hope that time will help the heart improve its function.  So, while ideally we do not want another surgery, in this case if they can find a problem and are able to fix it with surgery, it would be better for Jadon in the long run.

Of course, any heart repair would be done before the fundo-plication as this would take precedence.  We continue to appreciate your prayers and support for Jadon, for us, and as well as our other children as they are all starting to finding this process really long (12 + weeks!)

1 comment:

  1. Oh my you guys. Sooo tough. Praying so much for this little boy and his awesome family!!! So sorry that this has been and continues to be such a long journey!! Love Pam xx