Riley Eve Casey

Riley's last drain is out! Plus her oxygen got removed as well so now she is just breathing for herself.  All of this happened not without a fight though! We spent the past couple of days anxiously watching the drains to see just how much was coming out. On Thursday it was 50ml, Friday was 15ml and Saturday was barely 5ml. We knew that the magic number was under 20ml; so when the doctors were conferring with one another they cautiously said maybe on Saturday the drain could come out. But then the surgeons came in and said "Maybe in a couple of days it could come out". If you ever get put through an experience like this; expect that nobody is on the same page. You will have so many people telling you so many different things;  we have learned to just wait and see.  But in the end it was decided it could come out and Riley was not on board. Chalk it up to so many times over this past week us having to trot her off to do something uncomfortable and trying to encourag

The past couple of days have been a little challenging for all of us. Nothing we can't handle but not a great deal of fun either. For starters; Riley had been experiencing pain in her right arm over the past week. It would spring up periodically but mainly at night. So she would be resting and then all of a sudden she would scream in pain because it was too much for her; the solution is to give her some medicine to ease the pain. Only problem is Riley hates medicine with a fiery passion lately that she outright refuses to even broach the subject of taking anything. The other night Jess was staying overnight at hospital and Riley was awake for hours in pain and any time Jess would try to give her some medicine; Riley would immediately say the pain had gone away; only to then complain again 15 mins later. The doctors initially thought it might be a blood clot but then decided it might be a muscle issue either as a result of the drains or from posture issues post surgery. If you

Across the weekend we have had many ups and downs. You have some good times, followed by some bad times, followed by something good... you get the picture. On Saturday we began to see a little bit of the old Riley back. As you could have probably guessed; her first few days post-surgery she would barely crack a smile. Why would you when you are uncomfortable, sore and every hour you have a nurse come either to prod you or to make you take medicines that you can barely keep down. Slowly but surely she began to gain back her personality. We took her for a walk this morning to where the toys are on the ward and it was so good to see her come alive again; using her imagination and enjoying herself once more. It has been sorely missed; there have been glimmers of her old self but it was almost like everything was normal again at play time.  But towards the afternoon today; Riley was a mess. Blame it on not getting enough sleep when she wants to because a nurse needs to do somethi

We’re on the ward! So the question you may be asking is how did Riley go from being in the intensive care unit to suddenly on the ward without going to close observations first like I said would happen? Well Riley has developed quite a reputation here. Not necessarily the best one but at least a beneficial one. Originally she wasn’t even supposed to leave intensive care for another day but pressure came to move her out because they had so many cases coming through. Usually the next step is to get sent to a mini ward that has four beds all in the one room and a nurses station in the middle. If you do well enough then you get put into a double room on the ward then you will graduate to a single room. Problem is that word had gotten around about Riley’s anxiousness; whenever they tried to give her medicines she would cry and refuse; if they had to touch her for any reason she would freak out because she was worried they were going to do something that would hurt her. Wouldn’t y

The past week has been filled with CT scans, appointments, hospital tours and a dreaded blood test. Unfortunately it was that last one that caused Riley to get a little freaked out. In the lead up to her Fontan surgery she didn't seem particularly fazed by anything; almost as if all of the things she had to do was just what normal people do. But once she was told that she would need to do a blood test; she was not a happy camper. Tears and screams followed. Though when the needle went in she didn't even notice... The day before she would go in for the Fontan we were getting Riley dressed and she asked if it was operation day that day to which Jess and I replied "Operation day is tomorrow". The tears flowed again as she begged and pleaded with us that it wouldn't be operation day on Wednesday. Unfortunately that was not a request we could fulfil for her. So you would think that when it came to surgery day her emotions would go to a whole other level! Funnily

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 unde