14th-17th September Jax Updates

14th September 06:58 – Horrible night. The retching is back with a vengeance

14th September 11:09 – Iron infusion postponed waiting on chest x ray. Think he may have aspirated again!

14th September 21:11 – So the good news is it doesn’t appear to be a chest infection. The bad news is he is back on tazocin and tyke for a another suspected line infection! He’s very flat again. But he has won the battle before he will beat it again ….

15th September 12:53 – Sadly there is no improvement for this little guy. He’s still retching/vomiting blood and he’s very shaky and flat. For his chemist/scientist pharmacy friends his normal antibiotics ( tazocin and tike) wasn’t started,  instead he had IV Ceftriaxone. Microbiology have switched this today for Linezolid. He’s had the full MOT off his new doctor. She’s done bloods cultures sugars etc. We’re waiting for Neuro review.

15th September 17:24 – Confirmed as another blood infection. He’s got Staphylococcus epidermidis (staph epi) again !!!

16th September 21:09 – Unfortunately Jackson has deteriorated he is having ‘seizure activity’ they think his brain is confused. He can’t sleep cos his startles wake him. He can’t move because he retches chokes and goes blue. It seems like he is hurting but we don’t know where from, he just randomly screams.
We have never seen him react this way to a line infection. There’s no gastro doctors on over a weekend so his Neuro have been to see him and it might be a reaction to his new antibiotic.
There’s only one drug left that Jackson isn’t resistant too! We are in scary grounds. His blood infection still needs treating
He’s having emergency CT scan tonight followed by EEG tomorrow. Today his nurse (nurse B) has been amazing she has barely left his side all the other nurses have covered her other patients – Sorry I’m not answering all your messages we really do appreciate your well wishes.

16th September 23:09 – CT scan has come back clear so its more then likely a reaction to Linezolid or Linezolid reacting with Levomepromazine. He’s had his knockout drugs so has settled for now. We aren’t happy giving him antibiotics when there’s no doctors around as we don’t have a Plan B so we don’t know what’s happening !

17th September 08:53 – Very pleased to say our little man is back! Last night the decision was made to stop his antibiotics unless he showed signs off sepsis. (Then we would have no choice but to give him it). This morning he is responding and reacting to us. So the reason he was so ill yesterday was almost definitely a drug reaction. The last 24hrs have been horrible for everyone so thank you for all your support it really does help us.
Today he will have a eeg but we are expecting the results to be normal. Depending on his blood cultures we still might have to give him anti biotics for his line infection. But for now let’s just hope he continues to win his fight.  I will post a video of how he was yesterday later on so you can see how it affected him and it might help if your ever faced with the same.

17th September 11:06 – “Hi everyone I’m sorry I scared you all but I’m feeling better today. I’ve started my new antibiotics so hopefully they keep working. I wouldn’t look at dad’s camera cos I’ve got 24hrs of CBeebies to catch up on. Love you love Jackson