Hi again - Sam has had his first UTI post bladder and urinary tract surgery. So this is disappointing, but he has been treated at home and is back to his happy self. At an attempt to reduce the frequency of his UTIs, I was in Starship last week and learnt how to do a bladder wash out. This means each morning after I have drained his bladder I then inject his bladder with 100 mls of saline (Salty water). This is to stir up any sediment that might be forming on the bladder lining, which is where bacteria starts. It takes about 10 mins and Sam screams for the duration, but I'm not sure if it's painful or just uncomfortable and he'd rather be up running around.
We had a gastro clinic this week which showed Sam at the same weight and height he has been for a number of months. The team have decided to apply for permission to have a different milk formula for him. The current one he is on (which goes into his GJ tube 14 hr/day) is for up to 1 year olds! We have just been playing with the concentration etc, but it really isn't the right one for his age and stage. The other formula he needs is licensed in the UK and he would have had access to it had we been there... but each country has different policies and NZ for some reason haven't allowed the feed he needs to be on. Now they are making a case to get it, so we are hoping it won't be something tied up in paperwork for months.... but if he gets approval he will be the only person in NZ on it!
Sams blood work also showed he is needing an iron infusion again, so that will be a day in Starship in a weeks time for that infusion.
Sam is loving being back at kindergarten and today we had a home visit from the O.T. working on his fine motor skills. Next week the physio will appear again - after a long hard winter for Sam he has a lot to recover from and his muscle development definitely has been impacted. He is sporting yet another egg on his forehead where he fell on concrete yesterday without putting his hands down.
Over and out!