Relief

When we first brought Oliver home, Karli and I found that many of our conversations revolved around the contents of Oliver’s nappies. Never before had poo and wee featured so prominently in our vocabularies. The last few days have been the same. Oliver has been holding out for four days and had countless numbers of laxative doses given to him. Obviously, someone has a stomach of iron. This has meant that we have been feeding him minimal amounts through his nasogastric tube because his tummy has been too full, especially once some of his medications are introduced. He has also missed his second dose of vincristine (one of his chemo drugs) because it constipates him. We started to turn down his morphine yesterday, which is now at a dose 20% lower than it’s highest, and his ketamine which is 33% lower. This morning we had a very large poo J. We have had him in nappies that are only just his size because the others didn’t fit around his tummy well. This was fortunate because there was enough space to catch everything. Now all we need is for his mouth to get better so he can start breastfeeding again.

So he will get a second dose of vincristine today, and depending on how it all goes, I’m hoping we may get home by the weekend. I’m not getting too excited about it though. Who knows what could happen between now and then to keep us here. Secretly, I think they just love seeing our smiling faces – and Oliver is so cute.

We have been getting out more. I went in to the gym yesterday to do a workout while it was closed and also left some messages of thanks for everyone there. Oliver, Karli and I have been truly blessed by the generosity of everyone at the gym. Thankyou to you all. We then left our little boy in the hands of the staff and went to Dome in Subiaco for a coffee and just to have a chat in normal surrounds. It was a bit bizarre. It’s the first time we have been out together since all of this started. In fact it’s the first time we’ve been out without Oliver for a few months. With him being sick we just couldn’t leave him with anyone because he was so clingy with his mum. So we drank a coffee, chatted, and bought Oliver a “Twinkle, Twinkle, Little Star” book with lights and music and 5 verses to his favourite nursery rhyme. We have only just learnt the first 3 verses. Did you know that there are 5 verses to “Twinkle, Twinkle, Little Star”? Not sure how original they are, but they work.

It is still very surreal and hectic in here at the hospital. I’m not sure what to expect when we get home. We’ll need to get things to beep sporadically in Oliver’s room, and an automatic door opener to open and shut his door just as sporadically, just to simulate the disturbances that happen here, that he has slept through beautifully. Not sure how he will go with a quiet house and room.

But that could be a long way off. For now we will enjoy our little sleeping boy who poo’s, and hopefully today the pain relief will wear off enough that he will be able to play with some of his toys and listen to a story. Maybe we’ll get a smile and a giggle. We hope so. We both watched this video on my phone last night. We hope this little boy comes back soon.