Sam has stayed out of hospital, but still had a couple of visits. 1 to ED 10 days ago with suspected UTI, but as it was in the school holidays and I really didn't want to be in hospital, it was agreed we would try oral antibiotics into his G tube - just into his stomach. Normally it would go into his GJ (but he doesn't have one), so we could be confident it was exiting his stomach and being absorbed in his intestine... so this was a trial to see if he could a) keep it down long enough to hope it worked and b) see if he has the ability to absorb it...... it seemed to work as he was much happier. Yesterday he seemed to deteriorate a bit again, low grade temp, pulling up knees when wee'ing etc, so I think maybe a 10 day course would have been better, so am working on that and may need to restart abx.
Yesterday I took Sam to Wilson Home - a respite facility on the North Shore, with a view to having the staff trained to look after Sam for day visits. Once the staff are trained in Central Line/TPN we could leave him for overnight stays. It's a long way off (slow and steady!), but as the girls get older it could be a great tool to have in our tool kit so both Francis & I can spend uninterrupted time with the girls and perhaps do the normal things like go for a bush walk or a bike ride all together.
On Wed we were back at Starship for a 6 month renal review - all seems to be chugging along fine, with his numbers being good.
Next Thursday we are heading back in to have his G tube switched for a GJ tube, in radiology. Once this has switched we can restart his milk feeds and meds and start decreasing his TPN.
Ok, gotta fly, boxes to pack, junk to sell on trade me etc.