Apart from his heart rate fluctuating, Jackson is doing really well. The staff are trying to sort us a room for transfer back, once they have, hopefully we will be trained on PN and sent home
Monthly Archives: May 2018
The extra fluid has definitely giving Jackson his spark back. He’s back to trying to tear down his PN. So now the investigations are complete we are stable enough to be transferred back to RVI. We just need them to sort out a bed
Great Ormond Street Hospital Diary – Day 19
You wouldn’t think this little man was just off to theatre ! Update 12.15: he’s back on the ward just getting connected up for his AMD test this will run for the next 24 hrs Jackson got connected and the test started, throughout the day he has been fantastic but […]
Great Ormond Street Hospital Diary – Day 16
Jackson is back in theatre at Great Ormond Street Hospital, hopefully for the last time
Great Ormond Street Hospital Diary – Day 17
A big thank you for the lovely writeup from Lucy Air Ambulance for Children who flew Jackson down to Great Ormond Street Hospital Jackson’s big step forward
Lucy Air Ambulance – Jackson’s big step forward
Today Jackson has said goodbye to Dad and big sister as they head back up home. Our transfer has been cancelled as they were not ready for us at the other end and Great Ormond Street Hospital would prefer it for him to stay here in case he relapsed. (We […]
Great Ormond Street Hospital Diary – Day 18
Today Jackson has been on really good form. We went for a walk and he went blue in Superdrug but apart from that little episode he’s been brilliant. The consultants here are liaising with RVI to make the final decision if the investigations will take place on Thursday in the […]
Great Ormond Street Hospital Diary – Day 14
Making progress…… So we heard today the gastro team at the RVI have said they want the investigations to continue so Jax will be in theatre first thing for catheter placement. We also got told by one of the Doctors here that a Doctor from the RVI gastro team will […]
Great Ormond Street Hospital Diary – Day 15
We went out for walk with jax and he’s doing great. He’s back to bouncing and flapping around now we just need to keep him well for tests this week !
Great Ormond Street Hospital Diary – Day 12
Unlucky for some… So today all of the consultants came in to talk to us. Because of how Jackson reacted to the last test, GOSH aren’t sure if it’s safe enough to carry on. They are speaking to the RVI for more info. The RVI have seen Jackson react like […]