Yesterday I took Sam in to Starship for his standard review with his consultant and team (nurse specialist, dietician). Sam weighed in at a sturdy 8.3 kgs, so the increase of calories in his TPN over the past 2 weeks has managed to break the weight plateau he had reached. All pleased he is responding to this. His GJ hole continues to be an annoying issue of ongoing leaking and hyper-granulation, so we are going to try a 5 day cycle of viaderm cream on that (3 x day) to try and knock back the bacteria causing this. As for the leaking we just wait and hope his body starts sealing around the tube and he stops 'leaking'. All his fluid outputs continue to be 'normal' for him, so it was agreed to increase his enteral milk feeds to 17 ml an hour over 19 hours. This means he will get 320 mls a day of 'milk'.
Today the physio called to confirm that a standing frame is in the throws of being made and the company that will supply it should have it ready in 2 or 3 weeks. They will bring it to the house, meeting up with our physio and we shall see what happens!
We are trying to get Sam out more now the weather is being kinder, to see if he can't make some vitamin D himself. We give him daily supplements but it seems he isn't absorbing it, as his monthly bloods show he is always deficient, even after incrementally increasing the vitamin D. So with his sisters keen to choose, he is now the proud owner of a sun resistant swim hat (um... he won't be swimming) and he has been enjoying lots of walks and playing outside.
Oh we have also had a couple of additions to the family - over the school holidays the girls were given a dog and a horse from uncle Eddie & Aunty Karlene. I am calling them 'poo free pets' and you can see them over Grandads shoulder in the photo. With Sam not needing extra health challenges of pet germs to contend with, plus a landlord that refuses to let us have pets, PFP's are a winner all round! No vet bills, molting hair, food to buy, toileting surprises behind the couch, germs to spread or batteries to replace. Just delightfully painted paper mache and the girls love them!
We have had a great couple of weeks and very thankful for that. I leave you with a photo of the happy hat owner and a lovely one of him with his Grandad.