Hernia Surgery

Dominic has been quite stable over the last couple of days, wriggly (as always) but absolutely fine. He spiked a couple of temperatures – but he is on antibiotics and … well… he spent 5 hours being sliced and diced on Monday, I think even I would have some sort of immune response to that…

5 hours 10 minutes Later…

He’s out and back in PICU. The surgery went well. They took the graft from his throat so there was no need for an incision in his rib and apparently his cricoid was more than twice as thick as it should have been. We are now up to a 4.5 tube through the nose which…

The Current Plan

Just so this has some context – it’s 1am. Over the weekend Dominic’s temperature has stabilised. His X-rays are still coming back with a considerable amount of secretions present, but we think he has fought off whatever it was. All of the cultures (viral and bacterial) came back negative which means he didn’t have anything…

PICU John Radcliffe

Not exactly a photo that brings back pleasant memories… So, yesterday, we decided to put Dominic on a ventilator and sedate him before he became an emergency at some horrible hour in the morning. It’s just a fact that it’s easier to deal with significantly bad airways and poorly babies during the daytime when there…

Post Op MLB so far…

It’s 4.30am. Neither of us have slept, nor has little Dominic really. Since Monday he has been on steroids to help reduce swelling in his airways – unfortunately this just doesn’t seem to be making him better. His breathing is still severely restricted. Not being able to breathe properly is making him incredibly tired very…

MLB Photos

I’m not going to go into a whole lot of detail here – mostly because I’m not 100% confident in identifying all the right bits because all the photos look so similar to me! Anyhoo, these are the important ones: 001 – epiglottis  002 – vocal chords 005 – can identify just how small the…

MLB – Outcome of Surgery

So, having spoken to the consultant and pulled myself back together again I think I’m ok to explain what they saw and what are options are. Before I start, I want to say that this set of options really upset me. I can admit to being an emotional wreck anyway with the  general stress and watching…

MLB – ENT surgery

The day started at 4.30am. The point where I woke Dominic up to have his last feed before surgery. He did go back to sleep for an hour, but during that time I had to pack the bags ready to leave at 6am so in my opinion, the day still started at 4.30am. Check in…

The Standard Immunisations

I go on a lot about the extra-ordinary things we do with Dominic, but we still have all the normal stuff and normal problems too. Perhaps, unfairly, they just seem too minor to write about! However, some of the normal things are just as traumatic. Dominic is poked with needles constantly. Even I have a…

A Visit to the Vampire Nurses

One of the inevitable things we do every time we go to GOSH is visit the blood clinic. Dominic’s renal failure and treatment is all based around his blood chemical levels. The system at GOSH is simple but effective: At Clinic they print out all the blood test forms. For Dominic, this is about 5….

Nappy Origami and Stoma Care

At our first Urology clinic appointment we were commended on how beautifully we have taken care of Dominic’s Ureterostomy. We dont often get brownie points from the doctors so left feeling pretty puffed up and proud of ourselves! 😂 As Dominic only has one functioning kidney, and a “double loop” ureterostomy – there is never…

First working day of 2017

So, here we go again! Having taken an incredibly well deserved break over Christmas – no appointments, no hospitals and no emergencies! We begin the rat race again today. First things first – as we decide to leave to get the train to GOSH James decides now is the perfect moment to faff with the…