So we got home last night and all happy to be back. Whilst in we trialled having his G port on free drainage overnight to see if that helped with his night vomits. He still woke 7 times to vomit, even though he was just dry wretching as the fluid was coming out into his bag..... so although it was slightly better, it was still disappointing. We talked with the team and they agreed that we need to do further tests now to see what is going on between his stomach and his intestine, or 'What is making him vomit?'..... is it a blockage, a twist, a what??? After 2 years of sleepless nights for all, we are ready to find out what is behind it as this will also help us with other areas of his care.... we are trying to get him interested in food by play/putting food to his mouth, but we currently don't know if he has the capacity to digest from his stomach, so we want to know more before we go down certain routes, to avoid unnecessary pain or frustration for Sam and us. So on Monday we are booked into radiology to have a barium study done.... and any other follow tests that may deem necessary. This Friday Sam has an immunology clinic and next Friday he has ENT/tonsil referral.... so we seem to be back into a busy phase of hospital visits, but often things come in bunches and then he makes progress, plateaus then we reassess.
So we are pleased more studies can be done to try to help him.... for now Sam is just on extra antibiotics for his UTI and an eye antibiotic as he has grown a different bug in his eyes....
So hopefully this week will just be a quiet one where he can get 100% well and with that the slow lime green neighbourhood sightings may start to reappear!