23rd-31st August – Jax Updates

23rd August 22:39 – This was visiting a friend today. Jackson’s feed had just started.

23rd August 23:29 – This is about hour after the paw patrol video he is in massive pain again because of his evil milk feed


25th August – Jacksons peg extension has snapped inside the peg. Stomach contents everywhere YUK ! 2 of the nurses have played a real life game of operation and tweezered out the broken bit. Crisis avoided!  Thank you nurse M & nurse C

28th August – So as suspected Jackson has a chest infection, the months and months of aggressive retching have caused his fundoplication to go. Meaning when he reaches, he vomits but because he can’t coordinate himself he aspirated and the sick goes into his lungs causing him to choke turn blue de sat and need suction. Over the last few days this has got progressively worse. Today he got started on his go to antibiotic for chest infections! I’m gutted as we have been saying since he started retching blood that this was gonna happen .
In terms of his feed what is going in is coming out. He’s at 24ml a hour for 4 hrs. Then clamped for hour to try and keep it in. Then free drainage to get rid of any trapped wind and to ease discomfort. In that hour his milk is just pouring back out and what isn’t he is now vomiting.
We are not back to square one we are back to square minus one! Now his feed is putting his respiratory system in jeopardy.

Please keep sharing his story someone somewhere must know what this is
He will beat this!!!! He is a fighter. #answers4jax #jaxarmy


29th August – Unfortunately there has been no improvement for the little wee man.

30th August – Waiting for Doctors to see what the plan is for today

30th August – We have a new plan.
So the priority is get Jackson over this latest episode. His antibiotics are now IV so hopefully he will start responding to them. We need to check that his jej (the bit that goes into his bowel) is in the right place then he will be restarted on dioralyte via the jej starting at 5 ml building up to 22ml.
Great Ormond street: we are going as they can do tests that the RVI can’t BUT he needs to be stable for a period of 2-3 months before they will do any investigation. Jackson hasn’t been stable for 2 or 3 weeks let alone months! So we are along way off.