Hit and Miss

Our week with Riley has been a bit hit and miss unfortunately. Lately we had been planning for what happens next; how could you not when you have doctors confidently telling you that you will be out of the hospital by the end of the week? We had already decided that we would stay in Brisbane an extra week after she is discharged because we didn’t want to just rush home straight away following a major surgery like the Glenn (which when we told our doctors; they were all in agreement on that one since Mount Isa is so far away and doesn’t have a dedicated cardiac unit). We began thinking about all the things we could do during our week like maybe we could go to the museum, we need to shop for some winter clothes and of course all the places we could go to eat (I will miss Mexican most of all, can someone open one in Mount Isa before we get back? I would be forever in your debt). The only hurdle in our way to showing Riley the sights was that Riley needed to get herself out of hospital. At the beginning of the week it seemed like a sure thing. She got herself off of low flow oxygen, her sats/blood pressure/temperatures were good and she even had put on some weight. All we were waiting on was the green light from our doctor and we would be good to go.

Unfortunately it is Saturday morning and it looks unlikely that the predictions of “end of the week discharge” will come to fruition. Might be a few more days, might not. See we had been told that Glenn-Head was something that most post-surgery babies go through and they would just have to ride it out. Having a constant headache because your body isn’t adjusting to all the extra blood flow has not been fun for Riley. In fact her default setting lately is to scream the house down until she goes blue in the face (which little fact for you; happens really quickly for babies with heart defects). We had been told that she would start to get better but it seemed her condition was staying the same. I guess it would be easier for us to deal with if only Riley would sleep at night but Glenn-Head is causing issues there too. Before the surgery Riley never cried at night; after the surgery she is screaming in pain every 30 minutes or so. Add to that the fact that Jess has stayed by her bedside every night to feed her and is getting very little sleep. We take it in shifts lately. Jess will do the night shift, then I take over in the morning so she can go get some sleep. Then my morning consists of doing anything possible to distract Riley from being uncomfortable. Not an easy task.

You would think some form of medication would have helped but it only does the trick fleetingly. It’s like we get a short window where Riley is back to being her old self but then something sets her off again. One of the doctors spoke with us last night to let us know if she is still like this by Wednesday then they may need to put her on a specific medication that would help. The only reason they would be reluctant or haven’t done it already is the fact that once you begin on it, you can’t actually come off of it. So they are not keen to put Riley on it but if push comes to shove it may be what they do. Our hope is that Riley overcomes this and resumes just getting to enjoy being a baby again because right now it seems like she is absolutely miserable (don’t let the photos on this blog fool you, she would have just been given medication in them).  

As for us we are doing well all things considered. We are very ready to be finished with this period of our lives but it seems like it’s stretching a little longer than we had hoped. That’s the nature of the beast unfortunately. Future Heart Kid families my best advice I can give you is don’t get hung up on timelines because it will be your undoing. Learn to go with the flow because things can and probably will shift whether you were prepared for it or not. But even though we have had a difficult week, we have to put it into perspective. We have encountered so many different families this week going through hardship. One family had the all clear and went home for five weeks only to end up back in the hospital with their bub needing surgery again and another has been given a 50/50 shot at surviving. Riley is in pain but she is not dire and we are so thankful for that. Our situation could be far worse than what it is. Sure we had made plans for what all three of us would get up to when she would have been discharged at the end of the week but it’s not the end of the world. It’s difficult but it’s not the end of the world. 

But like I say every time (and put up Instagram/Facebook posts every day about), we believe that God has got this and encourage you to keep Riley in your prayers and thoughts. Not only us but the other families as well here on the Ward. We have spoken with so many families from all over Queensland trying their absolute hardest to give their child the best shot at life. Pray for them too. They need it just as much as we do.