Independence Day

At the beginning of this week Riley was a mess. A complete and total mess. The pressure in her head from all the extra blood flow had driven her up the wall and for anyone who wasn’t here with us, it was becoming increasingly difficult to explain it in a way everyone could understand. We would put up posts saying that Riley was “Irritable” or “Cranky” and it would in no way do justice to what we were seeing. There was even one point where we genuinely believed that maybe this is just normal baby behaviour and we aren’t handling it well. Thankfully the nurses and doctors confirmed for us that this was far from normal baby behaviour. So the question on everyone’s minds was “What is the solution?”. Dr Gooi had many ideas; Firstly he believed it could be reflux and put her on some medication for that. Made no difference. Then he thought maybe she has oral thrush and put her on something for that too. Failed again and the list went on. Meanwhile we all knew in the back of our minds that there would be two last ditch options for her if we couldn’t figure it out. One was for her to start on some medication that relieves the pressure but is very difficult to come off of (I am not going to write the name because I can’t even say it well, Jess corrects me without fail every time) and the very last option was to do an MRI.

I was quite optimistic about Riley’s progress. If she would even stay placid for a minute I would begin declaring that she is turning a corner whilst my poor sleep deprived wife who had been up all hours of the night with a screaming baby was less convinced. Dr Gooi eventually suggested we try taking Riley home for a night to see if she needed to get out of the hospital environment to somewhere more normal. So we took her home and I was in no way was prepared for the night I was about to experience. Riley woke up after an hours sleep SCREAMING like someone was hurting her and in no way would be consoled. After much effort in trying to put her back to sleep she would wake up again and again. That very next morning we both let Dr Gooi know we were ready for the next step; the medication. She was given a very strong dose on the Tuesday and by Wednesday Riley was back to her normal self again. She was smiling, playing and even talking to us again. Even when she cried, it was less intense. It was such a relief.

Momentum was building once more for her to be discharged because I am sure that they thought she would have already been gone a week ago. We even entered Riley’s room on the Thursday morning to see written up on the board “? Discharge Fri”. So what do you do when after five months of being away from home you see that the end might be in sight? You start getting excited. All through the day we talked about what our lives would be like when we resume normal life back home in Mount Isa. Meanwhile a ticking time bomb was about to go off. Riley progressively got crankier as the day went on. Not extreme like the other day but enough that it was concerning us. A thought crept into our minds that maybe the strong dose she had received on Tuesday had lead to a great Wednesday but after her blood pressure had dropped, they scaled it back to a lower dosage that wasn’t enough. We rang the doctor and spoke with him to see what we should do. He recommended that we return to the strong dosage and we would see where we were at in the morning.

After another overnight pass with a slightly better night, we returned Riley to the hospital. Her nurse

for the morning took her blood pressure and thankfully this time it was right where it needed to be. Then the doctors all filed in to discuss her progress. To be honest I kept listening out for any indication that they were thinking “Discharge” but doctors can take a while to get to the point. Finally they all agreed amongst themselves that Riley can be discharged from the hospital. It was like all our Christmases had come at once. We said our goodbyes and even got the nurse to snip her name tag off her leg (we treated it like it was a rite of passage huddling around taking photos of the moment). Even though we still need to drop by the Hospital Monday for a check up, it was the end of the road for Riley’s time as a patient at the Mater (at least for a few more years).

She still isn’t quite back to herself yet, that will probably take some time. And we will need some time too to figure out what life looks like day to day looking after a Child with a Congenital Heart Defect. We had ideas prior to diagnosis of what kind of parents we would want be and mostly we will get to be that. But this next part of the journey will sometimes be less about the parents we want to be and more about the kind of parents we have to be. We will need to be giving her medications multiple times a day, making sure that we are keeping things relatively hygienic for her and trying our best to help her avoid getting too sick (A fact for you, CHD babies aren’t more likely to get sick than anyone else but they are less able to fight it and it can sometimes lead to hospitalization). But at the end of the day we want to give Riley the most normal life possible, we want her to grow up to be a well adjusted, playful kid who never feels restrained by her condition.

And above all we are so thankful to God who has just been a constant source of comfort for us. There have been times across this journey where it has been tremendously difficult but we have never lost hope because we knew God was in control. I doubt we would have been able to get through this season without Him (Sorry if I am beginning to sound like I am making an acceptance speech at the Academy Awards)

So where to from here? Tuesday night we will arrive back in Mount Isa and our lives at home will begin. I might update this blog every once in a while just so anyone who googled this worried about their impending journey with a Heart Kid can see what life could be like for them. 

And that’s where I am going to leave things; we are now going to go enjoy Riley’s Independence Day! She has earned it tenfold.