The Lead Up To The Fontan

Here's where we are up to...

Even though I expected to find out much sooner than we did; we got a date for Riley's surgery. Ever since she had her Cardiac Catheter procedure we had been waiting on pins and needles to hear anything from the team at Lady Cilento. Anything at all. We knew we had an appointment with her Cardiologist in Mid-March and I was certain that would be the moment we would know; Jess being a nurse knew differently. These things tend to take time. However we were quite surprised that Riley's surgery hadn't even been discussed at that stage; they had forgotten to talk about it at their big team meeting. Then we were told by Dr Rob that we probably wouldn't hear anything for another few weeks because he had to go to Mount Isa then it was Easter so the whole crew couldn't get together to advance it.

It was a little frustrating. But then we got the call. In our minds we had always thought it would be maybe April or May; so you could understand our surprise when they said July. At first we thought; okay sure why not. But the more we got to think about that date; the more it sounded like a terrible time. First off Jess would be getting close to 30 weeks pregnant which would be uncomfortable having to help a child who is recovering from a major operation. Plus if Riley's recovery takes longer than expected that would mean Jess would be stuck in Brisbane because they do not let you fly past 36 weeks. The other hitch was that it would be terrible timing for the Church I am at; my Senior Pastor would be away at that exact same time and it's better for me to be there then. 

So Jess did what Jess does. She doesn't take no for an answer. She called back and got them to look at

different dates which is actually a big deal because there are so many different things/teams that needs to be co-ordinated and available for it to work. Eventually they told us the date they could do is Wednesday 23rd May. So even though that is still a couple of weeks away; we leave next week. Riley has some scans to do in Brisbane that they can't do in Mackay in the lead up to surgery. Once again Riley will have to be sedated for that so not entirely a fun day for her. 

We don't know how long we will be away for; that is entirely up to Riley's recovery. After her open heart surgery; they have drains attached which drain fluid from around the heart. Once that stops leaking then typically you are all good to go. However we have known people who that has taken weeks to accomplish; others months and yet still some are out in over a week. We will just see what happens. You might say "Well Riley is a pretty healthy kid; hasn't had any issues since" which is true but our doctors tell us that is never a real indication of how they will go post-surgery; it can always go either way. 

Our big concern though right now as we pack up and get ready for an extended stay in Brisbane is Riley's health. All this year she has had barely a snotty nose and then suddenly two weeks out from us leaving she develops a strong cough which can throw a real spanner in the works. We have been told that if a kid is even the slightest bit sick; the surgery will be post poned or rescheduled. So after all our preparation of finding accomodation, sorting things out with our workplaces, getting ourselves and Riley mentally prepared; there is the possibility it could shift. 

Thankfully Riley has gotten better since then but it still hasn't entirely gone away. 

At the end of the day; we feel confident that everything is going to work out alright in the end. God is good and has been good to us. But we know that prayer made a big difference last time so if you are reading this; we would ask that you partner with us by praying for Riley and that everything will go well in the lead up/after May 23rd!