Hi ho, hi ho, it's off to Melbourne we go.
Unfortunately, Kaylee has started to struggle a little with her oxygen levels. We have put her on a medication to help with it but we are on our way to Melbourne to be reassessed and see if we need to move her heart surgery forward or treat her differently. We have no clue as to how long we will be there or what will happen while we are there but we are just riding the train. Thankfully Jon and I got to spend a night together and I got to spend Christopher's fourth birthday with him. While my inner toddler is in the middle of a full blown tantrum, kicking and screaming at the current turn of events, I am pleased that we have this option and glad to leave this decision in the hands of my doctors. Some of Kaylee's episodes of her oxygen saturation levels dipping (de-sats, in the medical lingo) have been a little scary with blue skin and a bit of oxygen needing to be wafted at her. She often responds to what we call the magic pillow - that is, having her cheek against my skin (preferably my breast) when this is going on. Fortunately, she has been responding to her new meds beautifully but decisions regarding this medicine, possible side effects of the medicine, how long we can sustain it's use, how Kaylee may respond to surgery at this time etc. are big complex ones and yes, I am very glad I don't have to make them.
So we are on the road again.
VERY glad we got a week in Launceston to relax and refuel.
I have taken the last two days simply to decompress and soak up my husband and kids and I am thankful for that.
The transport is not quite so scary this time as Kaylee does not need to be intubated or have any scary looking machines and she is being transported by nurses I know to the care of other nurses I know. It is not a huge emergency. I know with a fair degree of certainty that when I get to the hospital tomorrow morning Kaylee will likely be in a similar state to when I kiss her goodbye tonight.
I am thankful for a million things.
I rage at a hundred things.
Through it all, I praise Him.