Jackson is still very poorly and flat and retchy. He’s on iv antibiotics but because he keeps spiking temps over 39* we suspect it’s viral and not line infection. But good news, his consultant is back and has said that Jackson can’t deal with formula so she has arranged for […]
Today started with physio which Jax loves. His physio is amazing.but today he was very flat. And not interested We brought him home for a few hours and he just slept and whimpered the whole time any movement results in retching so we took him back. Where he spiked a […]
So the cream for Jackson’s bum never arrived on Friday so I had a bit of a crazy mam moment (I’ll never understand why things have to get to crisis before anyone listens). Anyway I point blank refused to give him feed. There’s no way I was going to allow […]
So Jax’s feed went back on at 4pm, this video was just after 5pm. I’m gutted!! I wish the feed could stop completely but I accept his needs some to stop his liver failing, So I predict things are going to go bad again 😣.
As suspected Jax has gone downhill again. His bum is horrific and flaminal hasn’t worked. More creams have been ordered today, hopefully they will arrive because yet again he is breath holding and in a lot of pain.
Omg I’m so proud! Jackson is starting to stand unsupported!!!!! This is something else we got told he would never do! Go on Jax prove them all wrong xx
It’s here FRIDAY 13TH… surgery number 2 this week. He’s having a new jej so he can be fed!! We have had a good 3 weeks of no feed no retching no pain. But he needs some to protect his liver. So the feeding hell will start again…. Jax has […]