5 weeks today this nightmare started. we got sent home from hospital number 1 with a working diagnosis of rota virus. little did we know that 3 hospitals, 2 ambulances, 2 wards & 2 lots of surgery (one emergency) later we have 2 PEGS (one into his tummy one into his jejunem) a central line direct into his heart where he is getting all his nutrients and a poorly hand.
Jax is getting so much stronger by the day he can stand supprted on the side of his cot he is interacting and responding well. his feed direct into his bowel is getting increased by 1ml evry 12 hours and he is tolerating this well. his TPN has been reduced to 14 hours a day.
we know he has to have further surgery on his stomach when he is stronger (originally that was going to be 4-6months but i think that will be put back). this is so that jackson will have a opening from his stomach going into his bowel its called the pyloric sphincter Jax doesnt work his is closed tight! he must have been born this way so the surgery will correct this.
the PN feed (parental nutrition) has basically saved him the stuff is like redbull its amazing. it was a last resort and something we didnt want BUT it means we still have our baby with us because a few weeks ago we were honestly scared!!!
since the day after boxing day we have been living in hell. we have had some outstanding support that we will forever be thankful for and we have also discovered the hard way that some people cant be trusted.
it breaks our heart that our gorgeous little boy still has no answers we still dont know what the next part of his journey will be. all we know is that throughout all of this he has never lost his smile.
WE LOVE YOU JAX
please keep sharing his story everyday we are hopeful for a lead that may give Jax some answers. #answers4jax #thelittleweeman
we even got to sneak him off the ward YEAH xx