On Sunday Jax Jej came out – this is his feeding device that goes direct into his bowel and this is where he gets his feeds and the majority of his medicines. All milk feeds have been stopped (as there is no other way of giving him them) and he has a mickey button peg into his stomach. This is what he had in when we were admitted back at xmas, the purpose of this is to basically keep the hole open.
We are giving him his crucial meds (clonazepam, amytriptaline and omeprazol) via his peg but we know that his stomach doesn’t work so we just have to hope he absorbs some. His stomach is on free drainage except for 1hr after meds where it is clamped as soon as we unclamp it the majority comes straight back out

Some of his other meds he is getting IV as well as his PN which is where he gets all of his nutrients and basically life from ! But we still have that line infection, he is still showing positive results when his blood is cultured. We keep getting told that this is the same as his “normal” infections but I know it isn’t. I’ve had phone calls from oncall doctors and microbiologists have been on the ward looking through his notes and most importantly, it’s not responding to his normal antibiotics. Saying that though, Jax has been the best he has been since admission. I HATE jacksons milk feed – I think its the devil, I have seen Jackson go blue and breath hold with pain from feed so I am over the moon that he is having a break from it.

Jax’s consultant is on annual leave so his jej wont be replaced this week. To coincide with this, no milk means none of the meds that counteract the effects of the milk which is brilliant. I know that Jackson’s liver isn’t the best but we have honestly got our little boy back ! We are bringing him home for a few hours every other day and its amazing. He’s laughing constantly he’s just brilliant. He is very shaky and quite weak but I believe this is withdrawal from his drugs.

We are back now where we were in December 2016 (except for the PN) – Jackson still cant tolerate feeds and he is still in a lot of pain when he does feed etc. Hopefully when his consultant is back, she will start from scratch again and we can take it from there.

In the meantime I’m enjoying having my baby boy back, with one less tube hanging out of his body!

Long may it continue !