The List

Being a parent while your child is in the PICU can be difficult. Besides the obvious emotional rollercoaster you are on watching them go through challenges; your ability to assess what your baby wants or needs is a little harder to gage. Take for instance if you are at home with your child and they start crying; you immediately brainstorm what could be wrong. Could it be the nappy is dirty? Could it be they need burping? Could it be that they want to be held? Could it be that they are just being difficult? Sometimes you figure it out, sometimes you don’t. We have a lengthier list for Riley. Could it be that she is having difficulty breathing? Could it be that her chest drain is tugging and making her uncomfortable? Could it be that she is bruising from all the needles she has had to have? And the list goes on. It can be a little worrying when she starts to go blue from all her crying but somehow we manage to get her to calm down. Either we are getting better at this parenting thing or Riley is getting more settled after all the poking and prodding she gets from doctors. 

Add to this that when she is upset she does this kind of cough/bark hybrid. It seems to make her even worse. She doesn't do it all the time, only occasionally when she starts crying.
Over the past few days I had noticed that she had been doing that and thought it was a little strange but one thing I had embedded into me over these past three weeks is that if the nurse doesn’t react then you don’t have a reason to. But yesterday we had a nurse for the first time who noticed it too. She didn’t think it was particularly normal and decided to chat to the doctors about it. They began to get concerned too; wondering if Riley’s oxygen issues may be tied to this. Could it be that the reason that she has had such difficulty maintaining a good oxygen saturation rate be because of this?

They began to brainstorm how they could find out the answer. In the meantime we persisted with Riley’s high flow oxygen. If you have never heard of that before; it is basically like sticking your head out a car window when you are driving 100km’s an hour. You have something like this immediately after being on a ventilator and then they slowly wean you down to low flow oxygen until you are ready for it to be completely removed. For Riley, this is all that’s left standing between her and getting onto the ward. 

An hour later they returned to us holding a form for us to sign and telling us that they wanted to take Riley in for an invasive procedure to explore her airways; hoping it would yield some answers. But in order to do this Riley would need to be put back on the ventilator. So all her progress getting used to less and less oxygen pressure would be gone. This didn’t fill us with much joy because we felt like they weren’t certain that the cough was really anything bad. So they could end up with peace of mind finding nothing wrong and we would have put Riley through yet another uncomfortable situation. One thing we didn’t want to be is difficult. If it was necessary for Riley to get better we would do it but we didn’t have a sense of peace about this. Chalk it up to our Parenting Instincts finally kicking in. We didn’t sign the form for the procedure and said we would need to discuss it more in depth with the doctors before any big moves.

We returned later that afternoon to see Riley and of course to have the inevitable chat. However our nurse had some news; it seemed that Riley had somehow been on a lower level of oxygen all day and had been sitting at oxygen saturation levels that were fantastic for her. She brought the news to the doctors and they came to the conclusion that if she had been stable for so long on so little then maybe the procedure on Tuesday is unnecessary. They let us know that if she remained consistent at this level then they would cancel it. We were thrilled! Riley continued all through the night and even into this morning absolutely nailing her oxygen saturation levels. I explained in the previous blog that a healthy level for a heart kid is 75-85% and Riley would always sit within 65-80%; over the past day she has been fairly consistently in the 75-85% range. They will keep an eye on her cough but for now it's nothing to worry about.

We understand that things can change quickly and if she ends up needing to go in for the procedure then so be it but for now we are just incredibly proud of all that our little girl has achieved.