Today has been pretty uneventful, custards been a really good boy and although is really fed up he seems to be coping so well with everything they throw at him. Our neurology consultant came in this morning to explain that hes had talks with cardiology and respiratory and they think all these episodes are due to dysautonomia. Lucas was diagnosed with this a year ago after stopping breathing at home and being airlifted here. He has at some point in life/birth or born with incredibly large ventricles and therefore has a lack of white matter round the brain which has had a huge effect on his automatic nervous system and it appears to be getting worse. Theyve described it as the signals from his brain mis firing sending all his body crazy hence his heart rate dropping so low and his breathing to become effected ect ect. They are going to trial him on a drug called clonidine which works to sedate the brain. It is a drug that can have some nasty side effects and is usually used to help with withdrawal symptoms when little ones come out of intensive care, so he will be in hospital and monitored closely for a few days to see if one he tolerates it and two it has some effects. This will happen most likely Thursday/Friday next week after his ph study, which im absolutely dreading. Custards not had a nasal gastric tube since he was a tiny baby and they hurt so much when being passed :-0 but weve learnt from being in that lucas tummy is not absorbing anything and although hes jejunal fed now he has his meds ect in his tummy but they are not being taken in properly. Resus refresher training on monday then hopefully some results will be back.. another busy week but unfortunately until lucas is stabilised hes not safe to come home as they cannot guarantee his future, what a whirlwind few weeks im exhausted lol :-000 xxxxx
Posted on: Sat, 02 Aug 2014 20:53:56 +0000
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