So today is Monday and Francis went to work for a holiday! Not really, but he spent a large part of the weekend going in and out of hospital with Sam.
Friday afternoon Sam went downhill, so Francis took Sam in at 4.30 so I could be at home with the girls. It wasn't a great admission - lots of issues again, so long story short Francis arrived home at midnight to pick up Sams supplies - TPN, TPN pump, giving sets, Pepti-Junior (GJ feeds), milk pump etc and went back in and hooked Sam up himself at around 12.30am - 6.5 hours later than normal, which is not ideal for a boy that has damaged kidneys and is admitted with a urinary tract infection.
Sam needed to be in hospital to have IV gent. infusions - it takes around 30 mins and is an antibiotic that we can't give at home.... Francis would bring Sam home for the day, head back in for 8pm (when his infusion was due), would sleep the night in hospital after Francis hooked him up to TPN and then would head back home the next day.
Last night I took Sam back in for a 6pm infusion and brought him home for the night. Today a HCN (Home Care Nurse) came to our home and gave the infusion here, and will come to give his final dose again tomorrow.
So it's not been a great weekend, one where I've had to check my attitude many times. Again I can assure you that hospital is full of well meaning, amazing, hugely talented and kind staff - the systems need improving to help them care for our kids better.
We are hoping and praying that his reoccuring UTIs, will also become a thing of the past!