Get your tissues out. Absolutely over the moon at this. Jax new hospital physio has been brilliant and now he’s on his rocket fuel (PN) he did this today. He is using a frame called a Z frame hopefully he will get stronger and stronger. Last night he had more […]
Monthly Archives: April 2017
Jax first full day of blended diet and PN has gone good. we have had a lot of the puree back out even some of it coming into his jej tube. but Jackson is loving it he is even smacking his lips together the consultant said that he will be […]
we love the blended diet
well Jackson has had a bad day today he started off with a massive apneo went down to 46% but came back with masked oxygen a few blows in the mouth luckily no other intervention but we were close. then he has continued to not tolerate his feed AT ALL. […]
blended diet
ive not updated you for awhile because there is nothing to update we are stuck in groundhog day.. its deja vu but on a different week. Jackson isnt tolerating his feeds AGAIN he is in pain AGAIN his feed gets stopped AGAIN he then loses weight AGAIN gets dehydrated AGAIN […]
no updates
When we talk about Jackson’s hyper mobility this is what we mean. Its like he is made of plasticine. His sister is very jealous as she thinks he will be great at her stretch class. Xx
Jackson’s hyper mobility
Gutted to say Jackson’s latest blood culture has come back positive for psuedomonas!! My baby has septicimia. We are waiting for his consultant to come and talk to us about the plan….
Jax has septicimia !
Jax had unfortunately took a bad turn he’s had a rough weekend requiring more fluids. Today he has gone back on full maintenance IVT. His feed had been halved because he is retching so much. His central line insertion site is infected and we are waiting on more cultures to […]
Jax has had a rough weekend
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 […]
Feed increase – didn’t work
drum roll please………………. the amazing Barrie James’ Art Page (on Facebook) has created our little Jax logo
Jax gets a logo !
So today Jax’s consultant started her week rotation she doesn’t see the point in trying to force him again!! like the others. She agrees when he reaches his fluid limit via his jej the rest needs to be IV fluids via his central line. So she is arranging it with […]