Over the weekend Sam's leaking GJ tube continued to worsen, which meant his skin has become extremely excoriated from the stomach fluids, even though we've been trying to keep it dry and sealed with various creams. The tube continues to move in and out slightly, which means he is uncomfortable as it is moving in and out internally. It also means that there is zero chance that the skin can heal and seal around the tube if it is moving. We've had to remove half of the clamp that keeps the tube in place as it was proving impossible to keep the skin clean - and I'm attaching a photo so you can check it out.
So after sending through video footage of it leaking to the team at Starship, they contacted us this morning to say that action is definitely required asap. So today Sam will be admitted to Starship for what we think (yet to be determined as the various teams need to talk/review him) may be a surgical procedure to attach a more permanent GJ attachment to him. At this stage we are awaiting for the call to say when a room is ready as they are kindly letting us be admitted straight to the ward as it's better for all if we wait at home rather than in the emergency department. We won't be coming home until it is sorted.... so we are hoping and praying it will be days and not weeks.
In a weird way it's nice to be going in when Sam isn't acutely ill - he doesn't have a temperature so bacteria aren't the issue. It's nice to be able to have the morning planning the week, getting to Pak'n'save, having meals sorted and not being admitted amidst chaos.
Sam's anatomy is unusual (or very special depending on how you look at it!) so standard solutions don't often apply for Sam. So we are praying for wisdom and ingenuity for the team as they tackle this issue. It's really important not just for his skin integrity and his happiness, but for keeping his TPN requirements down by having milk feeds, which protects his liver.
I'll be staying in with him and our usual amazing friends have stepped up to do school pick ups etc when we can't. We so appreciate you all!