Jackson has been walking again with his frame and doing absolutely amazing, so much so his physio and respiratory thinks that now he is up and about we should try him without oxygen. which we have done he’s had 2 apneoas when he was asleep but he self resolved. he will go back on oxygen overnight then during the day just give him it as and when he needs it AMAZING! last time this happened he lasted 3 days then crashed and needed blue lighted to A&E so if anything happens as least we don’t need a ride in Jax taxi
One of the gastro consultants came in to tell us after extensive discussions with his consultant it has been decided to refer Jackson to Great Ormond Street for further testing. they admit that they don’t know why Jackson responds the way he does when he has a feed “he has rare & complex dismotility”. the test that they can do he can show the transit of food but dont show WHY it isnt transitting and why it makes him breath hold etc. apparently GOSH can do them tests. gastro also want to have a team meeting with Jax other consultants (neuro & Resp) to see if they want to refer Jackson as well because when he is down there he may aswell get all the testing done. we dont know how or when this is happening but it is a plan. they cant send Jackson home on PN when there isn’t a explanation as to why he needs PN. in the meantime they are starting him back on feed at 5ml per hour as this is what Great Ormond Street will want. we know when he gets full he will get ill again but GOSH need to see this.
so there’s a lot for us to think about but at least theres a plan yeah! xx