Day 94 – 28th Jan

Thomas has had an interesting couple of weeks.

There have been no updates really as there wasn’t much to say other than ‘still weaning his ventilation’. This was going really well and he was settled, happy and content.

However, he’s been hit again by infection. Thomas managed to get down to almost extubatable pressures by Tuesday of last week. We were planning his extubation to be Thursday or Friday, following one more pressure wean and we’re talking about the best non invasive ventialtion to wean him on to. However, by Wednesday morning all this had changed and he was desaturating over night and required increase in ventialtion.

By Wednesday morning, all the work of the last two weeks was undone and he was back on the same high pressure that he was when the weaning was started. This has come as a bit of a blow to us, as we really believed we were getting somewhere this time.

So, over the last couple of days, his infection markers have risen, he’s been treated with antibiotics, and they have begun to fall again. However this time, so far his blood cultures have not grown anything from either his blood stream or his broviac (permanent central line). So it’s where the infection is that’s the question at the moment.

Thomas’ latest chest X-ray has shown some change on one side, with it looking much less clear, which is typical of a chest infection so we are just awaiting results from microbiology from his aspirates to see if anything is growing there.

More long term, Thomas has another bronchogram tomorrownto look at his airways again. As we know, he has severe tracheobronchomalacia and tomorrow should show us image can have areas of his airways stented to keep them open or not. If not, we may be looking to go down the long term ventilation (tracheostomy and ventialtion) route.

In the meantime, we will let him recover from whatever this is and then restart the weaning. Again.