So on Monday Sam was in Starship at his monthly gastro clinic. It was decided to try him on a new medicine to try and help with the constant night vomits. On Tuesday morningthe physio arrived at 8.30 am to do her thing and Sam was just being weird (having just had 2 doses of the new medicine) - really slow to respond, glazed over look, bit wobbly on his feet, mumbling his words etc. So we didn't achieve much, but then set off to Mainly Music at 10.30 am, with a view to keep an eye on him. He normally is very attentive and involved, but he was just a bit crazy - running around but not really following what was going on. Tuesday night he woke to vomit 8 times, so clearly it wasn't working just yet! Wed he seemed even more out of it, babbling on and we couldn't understand him when he is normally so easy to and then we notice that his clothes were hard to get on... he had put on lots of weight. He was still happy, but just bizarre. At this point we note his urine is also quite browny/red... not a great sign when he was on day 6 of antibiotics for an infection. So I emailed his specialist and it was agreed to take him off the new medicine immediately as he was clearly having a bad reaction. I checked out on line the side effects and was concerned that A: there were so many listed and B: he was showing about 12 of the 20 listed bad effects and it also said, 'some of the effects may be irreversible'!
Roll around to this morning and Sam is back! It is frightening how different he was on this medicine and so nice to have him back to normal this morning.
Due to the urine clearly not clearing, I headed to Starship for 11am, with my bag, as it was quite likely we might need to stay in to have IV antibiotics..... BUT the great news was Starship was full and had no beds! YAY, I said, that's totally fine, we'll go home and can just do the abx at home ourselves! We've done them before, but each time I have to get trained/signed off and the nurse that did this was on holiday and the other one that could do it was sick at home in bed.... so I headed down to Daystay where they gave him is first dose and I came home with the rest of his course and the home care team are going to pop in once a day to administer it. Currently he is being treated for e-coli which responds to a once a day dose of something, but if the new bloody sample that was sent off today shows something else, we may still have to head back to Starship to be admitted. I'm really praying that we don't need to as Francis has his bags packed to head to the Solomon Islands on Saturday for 10 days.
Today I was planning on spending it with my friend Jo, back visiting from the USA, so rather than miss seeing her, she graciously popped in and passed the time with me at Starship - now that is a true friend! Although her photo is on our fridge, Sam kept referring to her as 'lady'... was very cute.
The girls went to school not knowing who would be at home when they got back - I'm so proud of them, they live with such upheaval. I got home at around 2.30, sorted out Sam and once the girls were home and fed, the dvd babysitter came to life and I went to sleep for a couple of hours to catch up on the night before - but as I had made dinner at 8am this morning (half expecting to not be here), it was a treat to wake up and dinner be ready!
So we're pleased to have Sam back after his brief 2 day visit to La La Land, hoping and praying his uti clears and hasn't morphed into some other strain of horrible and the doctors are left scratching their heads as to what could help Sam with his vomitting.