It has been two weeks today since Bella’s gastrostomy. As it turns out we haven’t started feeds yet, we are waiting until this Thursday when the bandage dressing is removed at the hospital. When the HENS (home enteral nutrition service) nurse visited last week we were shown how to use a pump and the basic feed process but as we couldn’t see the tube entry due to the dressings we didn’t feel confident not being able to check for blockages etc. and neither of us were familiar with the bard style button maintenance so it was decided it was best to wait until we visit the hospital again before we start feeds.
Supplies have been arriving all week and I’ll have to find somewhere in the house to store them to get them out of the hallway – who’d have thought you’d need so much equipment! We now have a feeding pump, stand for the pump, feeding containers for the formula to hang up on the stand (they allow 1 per day), feeding tube sets to connect to the pump (they allow 1 per day), syringes for flushing before and after feeds and for bolus feeds, different size tube connectors (not sure what these are for yet!). We’ve also had to get a foam wedge to prop up her bed as feeds shouldn’t be done lying down. I think we are going to find it hard at the start to get her used to sleeping raised at an angle as when we’ve raised the bed before for reflux issues she just keeps slipping down the bed. Bella’s still been in great spirits; she’s not sore anymore and has been back at school for a week now.
So Thursday we see the surgeon for our follow up appointment and the dressing will finally come off and we’ll see what a bard button looks like for the first time. I know Bella’s especially looking forward to being able to have a shower again!