It's Monday night and I am at home with the girls and Francis is doing 'boy time' in Starship.
Today Sam improved dramatically and is now on 1 litre of oxygen. He is back on the ward and has had physio input, so he is having to puff and blow on a pipe sitting in water with soap - we call it the car wash and as he keeps blowing the bubbles spout out the top onto his cars. It tires him out, but it causes him to cough and his chest is clearing.
Unfortunately one of his xrays didn't just show that he had pockets of pneumonia, but that his central line that is embedded in his chest and through which he receives his nutrition has moved! So instead of it going into his main artery just above his heart it seems to have migrated and is in a smaller vein in the other direction. It could have been like this for months, but as they know about it the can not use it. So he has a temporary peripheral line in his arm and he having 24 hour feeds through his arm (can't run it at the higher rate/volume as when in the big artery). The central line in his chest needs surgery to move it back but they can't do this until his chest is clear. So it is a bit of a waiting game.
Jas turns 14 on Thursday and she has already figured out that it will be a split birthday, so I will be with Sam tomorrow night so Francis can catch up on sleep and I get to be home Wednesday night so I can wake up and do birthday with my big girl - I gave the girls the choice and there answer involved eye rolling and comments about Dad not doing balloons and glitter and party decor as well as me....so although she is turning 14, still at that age where she wants to do party girl things. The girls miss Sam hugely and Jas is disappointed Sam and Dad won't be here on Thursday morning.... but it is what it is and the birthday will still happen....
Right, off to make the most of a pump free, nurse free, alarm free, oxygen hissing free sleep!
Next blog I will tell you some of Sams very funny classic comments during this admission and have photos.