Came in at 9am. There was no ‘shaky shaky’ (as Dr Simon calls it) ventilation! He went onto conventional ventilation at about 1am. He’s having to work much harder, and is having big sweeps up and down in terms of his oxygenation, but is still able to sit in air now and again. He’s still on chloral – and wiggles a lot, which affects the oxygenation/respiration. Had a blood transfusion overnight, and is looking much pinker. My expressing is not going well. The 9am expression resulted in only 7-8ml of milk. I have insisted I need to go back onto domperidone – and all have agreed. Dr Peter is on today and made some little changes. He couldn’t hear a heart duct – and has ordered a cardiac echo for tomorrow to check it properly. Another cranial scan is due on Thursday. Then, after a bit of a talk with the other consultants, he thinks they may try taking the ventilation tubes out on Friday or Saturday and try him on CPAP. We’re a bit nervous about that, but it has to be tried.
He’s back on diuretics, to try and lose a bit to the excess fluid. The EBM he’s taking has now been fortified with extra calories to try and get the true weight up.
Today was Linda’s (nurse) last day. She has been there for Max and for us through some of the absolute worst days. I made a bit of a fool of myself when I realised she wouldn’t be back, crying my eyes out. We will miss her terribly.
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