Oliver has asked me to take over this week as he’s busy resting.
Oliver’s been pretty snotty for the past week and has struggling to clear it himself so he has needed some suctioning to help him. It’s hard seeing him look so fed up when he’s coughing and struggling to breathe through his nose.
In other news there isn’t much news! Oliver has made no progress with his feeds as we’re caught in a cycle of him not tolerating more feed and it causing him a sore bottom which means less feed so he’s reliant on PN…which in turn isn’t good for his liver. Oliver had a barium study last Friday to see if he had any obstructions in his bowel that were causing him to struggle with his feeds but this came back clear. We have been able to try Oliver with some fruit puree though and he’s so far sampled mango and apple and enjoyed these and it’s nice to see Oliver enjoy tasting food as all his feeds go through his NG so it’s only yucky medicine he gets to taste otherwise.
This Friday sees the outcome of Oliver’s liver transplant assessment and we’re pretty much certain of the outcome. Our brave little boy needs to be listed for a liver and small bowel transplant. After pinning our hopes on his stoma reversal being a success this hasn’t given us the progress we’d hoped for and Oliver’s liver remains fragile.
To say we are frustrated is an understatement, we thought we’d have a premature baby, let alone be in hospital after almost 9 months in this situation. There really is nothing harder than watching your little boy growing bigger everyday whilst knowing we are still no closer to getting him home. Still, every day is a new day and we’ll take it as it comes.