Sunday, July 6, 2014

So Close... yet So Far!

So yesterday Sam was discharged for home at around 1.30 pm. His nurse called me at that time to say that Francis and Sam had just left the ward, and she then proceeded to talk through his change in medicines, his fluid regime etc... The call took about 10 minutes, then I hung off. About 2 mins later I get a call on my mobile from Francis saying, 'oh no, it's a disaster!'. The long and the short of it was that as Francis was lifting Sam out of his buggy to put him in the car seat, his GJ tube got caught on the buggy strap and pulled out. This was indeed a disaster, and he quickly returned to the ward and was readmitted! The gastric hole of course meant that gastric fluids were flooding down Sams tummy and on to his legs and he urgently needed to have another tube inserted. BUT it was Saturday and there are no radiologists available to put the GJ tube back in (it has to be done under live xray), so we have sat festering in Starship waiting til Monday morning, when we hope Sam can have his GJ re sited. Currently he just has a standard G tube in, which can only be used to drain his tummy - we need the J put in (which feeds down into the small colon) so we can give him nutrition and medicine. His GJ tube gives him around 30% of his nutrition (a milk type formula), so he has had to have this extra fluid given to him intravenously. As Sam was due to come home, his TPN had been ordered to be made up for the home system (remember our home pump and TPN is incompatible with the hospital pumps/system!), so I had to race in yesterday afternoon with the home pump or else Sam wasn't going to have his normal IV nutrition. So it's been a frustrating and disappointing weekend. Normally when Sam has his GJ tube changed, the radiologist threads a wire into the current tube, pulls off the old tube and feeds the new tube in over the wire. This way can mean it's simple and straight forward and around a 30 minute procedure. Historically due to Sams unusual anatomy, it has been really hard to feed the tube in and had to book in surgical time so he can have it put it while unconscious. We really hope and pray that it can be put back simply and easily tomorrow..... cos we'd really like to get in the car and leave! Tomorrow is day one of the school holidays and it would be lovely to be home with our girls and boy under one roof! Day 35 tomorrow.... we'd really like to wake up Day 40 at home. X

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