So they have tried to increase Jackson’s feed for the 6th time and it hasn’t worked. Yesterday was awful he spent most of the day screaming his head of then going blue then sleeping. He didn’t meet his normal fluid intake because we had to pause his feed. We tried to have more feed overnight to make up for the lost fluids but that didn’t work!!!
We are at a loss basically Jackson needs approx 1000ml a day (says the book), but for Jackson to function ‘normally’ he needs a extra 200ml. He can tolerate 41ml/ph in 24hrs via his jej (direct into the bowel) the extra he gets IVT via his central port. The problem is he can’t go home on ivt and he wont/cant tolerate fluids anywhere else.
So today in-between episodes I sneaked him out to see the ducks xx it was a short trip but he still smiles his head off despite what he is going through. He’s amazing