Riley Eve Casey

This update will be short and sweet... Things didn't go according to plan as you may well have noticed. We had our Thursday appointment with our doctor; we were quite confident that we would get the tick of approval to head back to Mackay. There were some signs that we shouldn't have been so confident; namely that Riley would wake up with a puffy face that wouldn't go away until close to mid-morning. He had flagged this upon her discharge last Monday and said that he would check in on it for her follow up appointments. He pulled up her Xray and it showed that there was an excess of fluid built up on her right side. The anticipated trip back home by the weekend was not to be. She would need to take extra medication to temper it and he would want to check in on her a few days later to see if it worked. If it hadn't we would be moving into getting a chest drain put back in which we all didn't want. He said there was not enough fluid there to warrant that option b...

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 som...

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...

Yesterday was a very long day. In the lead up to Riley getting the Cardiac Catheter Procedure we found ourselves constantly having to explain it to everyone; I get that people don't know how this all works. I didn't even know anything about all of this until we had Riley. That's part of the reason why we wrote this blog. On the one hand maybe there will be a family who stumbles upon it and needs to hear from somebody who has been through something similar to them and on the other hand it's a great information tool for our friends and family so I don't have to explain the same thing over and over. Even though I inevitably have to anyway. The funny thing I found was quite a lot of people thought that this procedure was her open heart surgery. Whenever we told people we would be back by the end of the week they were shocked because they were under the assumption that we would be gone for months. It was then a little bit awkward to explain that what she is about ...

At every single appointment we have had with Riley's cardiologist Dr Justo without fail he would say "The plan is that we will let Riley have her fourth birthday and then after that we do her Cardiac Catheter Procedure and then we will do her surgery". Well Riley's birthday was this past Tuesday and guess what we got a call about on Thursday? We finally have a date for the Cardiac Catheter Procedure. It's going to be on Tuesday February 13th. For some weird reason I always had a feeling it would be mid-February. We happen to have one of our biggest weekends at Church around that date and I just somehow knew that out of all the dates it could possibly fall on; it was bound to be then. The game plan is that we will need to be in Brisbane that Sunday so we can be there for pre-admission on the Monday. Like I have said before; this is not the Fontan surgery. This is an exploratory procedure that involves inserting a thin hollow tube into an artery or vein whi...