The Pretend Patient

When I first started this blog there was so much to write about, in fact I think there was a period there where I would write every second day because so much was happening. Currently that is not the case. Riley has been given a nickname by the doctors and nurses that is beginning to stick; they keep referring to her as “the pretend patient”. All those drugs she needed to take? She is down to only one and it’s aspirin. All those stats they needed to get from her every few hours? They don’t even do it overnight anymore and aren’t concerned. At least any feeding or changing nappies? Well we do all of that so they don’t need to. If you are a nurse on the cardiac ward, you will barely have anything to do for Riley. The doctors come in for their rounds every day and it is turning into a time to have small talk with us because there is nothing about Riley to discuss. You can understand why there has been a push for Jess and I to take her to our accommodation full-time.

Unfortunately that hasn’t eventuated as of yet. Although everyone is on board and pushing forward with the idea, it has now all boiled down to the finer details. Writing plans, risk assessments, policies and implementing them across multiple departments. We have been assured that it WILL happen but everyone has a different opinion on WHEN that is. We anticipate another couple of weeks, though we could be wrong. 

Now when I speak about Riley being boring and just a normal baby that the doctors and nurses are unconcerned about; that is not entirely true... 

For example; She still has to work harder than most babies just to keep her heart beating and blood flowing to all the right places (she uses up more energy to do these simple things than most other people) and she still has a delicate fluid balance (which means she can’t go more than 4hrs without a feed and we keep a particularly close eye on her wet nappies) but these are relatively easy things for her and us to manage at the moment. However, there is one other thing lurking on the horizon that could be a cause for concern. Just like anyone else, Riley had a Heel Prick test a few days after birth where they draw blood and test it for any abnormalities. We didn’t think anything of it because it happens so often and is routine. Nowadays she will get her blood taken to measure so many things. When one of the doctors came in to discuss with us the results of that particular test, I must admit I had forgotten she even had it done. The doctor let us know that she had “news”; Riley’s results had come back mostly clear but they indicated the possibility of Cystic Fibrosis. The only way to definitively discover whether that is the case is to do a ‘Sweat test’ which is exactly what it sounds like. They let us know that they only do this test on Mondays; and of course they let us know this on Tuesday so it would be a full six days until it happens. 

We were told that this test happens all the time and that 9 out of 10 children who are tested for it come back with negative results. And even though that is 
comforting, we have been around hospitals long enough now to know that 1 in 10 being positive is also a pretty significant result on its own. We cannot even begin to fathom her incredible bad luck if it turned out that Riley not only has a Double Inlet Left Ventricle Heart but ALSO had another rare, serious, congenital medical condition!

But we are confident about a good result. Jess and I both don’t have any family history of Cystic Fibrosis which can play a major part in having it; and Riley’s health so far has been stellar (all things considered). But that doesn’t mean we don’t need prayer. We know that Riley has gotten this far and done so well because of prayer and faith. No doubt about it. Our hope is that the test on Monday is simply a formality and when we get the results back a few days later there will have been nothing to worry about and we can continue not having anything too interesting to tell you!