Little Miss Crankypants

I would hazard to guess that not everyone reading this has spent time in the PICU with their child. It’s filled with wonderful nurses and doctors who take care of your kid as well as you but no matter how wonderful they are, all you can think about is getting out of there as soon as humanly possible. You just know that if you aren’t moving out pronto then something is not right. The first time Riley had her stay in January she managed to stay much longer than we were anticipating; this time the PICU staff wanted to move her out quicker than we were expecting. In fact the very next day after surgery Riley just didn’t fit whatever criteria to keep her there. Only problem was that the doctors needed to put a line in her chest during surgery that wouldn’t be removed for five days and the Ward refused to take her until that happened. Thankfully someone had a change of heart and made the arrangements for her to transfer. It was nice to return to the ward; it feels a little like home in a strange sort of way. One of the nurses even made a little sign that said “Welcome Back Riley” and put it on her crib. But going through this whole process again has made us even more anxious to move on. I guess if the Ward is like home in this metaphor, we are like the teenagers who can’t wait to move out of Mum and Dad’s place and finally be independent. 

That independence of course is completely reliant on how Riley is going. Over the past few days she has needed low flow oxygen but it is hardly anything at all. In fact her oxygen saturation levels have been far better than what they were pre-surgery; it’s just when she decides to get cranky that they drop (oh we will get to that). She also had some chest drains that were removed as well which is always a good thing. Have you ever tried to hold a baby with chest drains? And wires? And oxygen tubes? Not fun for you or your child. You just keep having to check yourself that you are not yanking on a cable or tube that could cause them pain. Or even worse when your baby decides to grab one of them and give them a pull. Never goes well. Another big issue that can occur post-surgery is that your baby can struggle to feed which is something we never actually believed would happen to Riley. She has been so greedy with food; the moment you cut her off you will hear it down the street. So we were surprised when we were allowed to feed her again with a bottle and she had absolutely no interest whatsoever. She seemed to take a little and then would just give up. In fact we were told that some babies can get sent home needing to feed via nasogastric tube which we just really would not like to happen. We are not completely out of the woods with this one just yet but we had a win tonight. It appears that maybe Riley likes to get her milk from the source rather than a bottle. She fed quite well and if she keeps it up then that nasogastric tube will get removed very soon.

But you know what the biggest thing that happens to a baby post-glenn surgery? It’s something the nurses refer lovingly to as “Glenn-Head”. The aim of the second surgery is to increase blood flow throughout the body and of course it takes a little getting used to. That blood flow unfortunately can give the babies massive headaches. We were warned that Riley wouldn’t just be cranky when she gets Glenn-Head, she would be OUT OF THIS WORLD Cranky. We thought we had dodged this bullet over the past few days because she seemed to be recovering well and was getting back to her old self. But today we got introduced to Little Miss Crankypants. She was inconsolable. Let me put this in perspective: The day after Riley had open heart surgery, we were able to distract her and help her calm down (I am sure some of her medication helped). But today everything set her off and there wasn’t a whole lot we could do. We have been told by the doctors that this normally lasts close to a week and the only thing we can do is ride it out because she just needs to learn to adjust. Fingers crossed she sorts herself out quickly because it seems like discharge day is right around the corner.

We can hardly believe it but all signs seem to be pointing to freedom by the end of this week. During

the morning Doctor’s rounds, our cardiologist this week told us that they are working towards Riley being discharged from hospital by this weekend. Following that we had Dr Gooi (who diagnosed Riley in September) drop in and jokingly say that if we weren’t discharged by the end of this week, he was going to kick us out. Of course anything can happen to change that but the only things that need to happen for it to come to fruition is for Riley to kick her oxygen habit and sort out her feeding. They seem to be confident that she could do this by the end of the week. But we also recognize what a big difference prayer and faith in God have made in her journey! We ask that you please keep Riley in your prayers this week and pray that everything would come together for Riley to finally no longer be a patient.

Independence Day is fast approaching and we couldn’t be more excited!