Saturday, April 13, 2013

The Waiting Game

Several of our heart friends are gearing up for Fontan surgery this summer. Fontan is the final procedure of the three stages most HLHS patients undergo to "re-route" their plumbing, so to speak.
(For a more comprehensive explanation, check out this link:

This strikes close to home for us, as Jonas is closing in on age 4, and still has no date in sight.

On one hand, this is fantastic news: Jonas is healthy enough for now that we don't need to rush into surgery.
Some HLHS patients require their Fontan as early as 18 months old. When Jonas was first diagnosed after birth, we were told most children undergo the last step on average between 2-4 years old. The goal is to complete the process before Kindergarten, so the child doesn't miss a large portion of school while recovering from surgery. Like most children with a congenital heat defect, Jonas is slow to gain weight.
He's a great eater, but he is also just as active as a heart healthy child, so the weight he does gain rarely sticks. Weight is a central focus for heart patients, because many procedures hinge on them being a certain size. Miami Children's Hospital requires Fontan candidates to be at least 30 lbs. before they can be scheduled for the procedure. The reason for this is the tube that is inserted to assist with blood flow to the heart will not grow with Jonas as he ages. The human heart reaches adult size at age 5. The older he is, and larger he is, the better it will be for his overall  heart function. It also decreases the need for surgical intervention at a later date. Jonas hovers around 26-27lbs, and has for quite some time.

                                          Sick? Who has time for that? 

So why am I stressing about this procedure? The bottom line is this: Jonas will have to have this surgery, it's just a matter of when. He's not going to "get better" and not need it. He's not going to magically grow a left ventricle. It's increasingly frustrating to me that we have this big question mark hovering over our future. I would much prefer to just get the procedure over with. Of course, it needs to be done at the optimal time for him, and now is not that time. We've just been living such a routine existence, that this is going to shake everything up. Our "normal" is a lot more normal than most heart families: Jonas has only had one hospital visit (A routine cardiac catheterization to check on his heart function) since his second stage surgery at 4 months old.  We only see his cardiologist twice per year. We're not in and out of hospitals, and he doesn't have any other medical conditions.

I know I need to be patient, but it's easier said than done at times.

Finally, my thoughts and love are with all the families going through this phase this summer.