Summer 2019 – Day 3!

We dropped Austin off for his adventure with Nannie and he climbed up the door sill at Rory’s side and said something before giving him a big kiss, jumping down and toddling off. hes such a good big brother, his understanding is amazing. My first tears of the day and certainly not the last.

We arrived at Sheffield Children’s Hospital and made our way to the theatre admission.

Rory refused to cooperate with anything. He knew what this uniform circus was all about and he wasn’t about to perform!

No wristband, no gown, no height and weight, absolutely no observations allowed.

Connect 4 – hell yes!

Soft play – come at me!

Standing on the scales when you just aren’t looking – that’s him!

Ravi and Dr Campbell who were both doing something to him from a gastro and ENT point of view came to say hello and answer any questions, the anaesthetist came to chat and off he went! First on the list!

Daddy took him in and I waited outside, wiping my tears and wondering if he was ok, if Ash was coping and what would come of this whole thing. I usually cope well but today emotion got the better of me.

It wasn’t too long before we were called in and he was awake. He was distressed but when I got there, on my instruction, the nurses took everything away that he had gained whilst asleep…gown, wristband, cannula and he relaxed although he didn’t want the bed so he set up camp on the floor.

That’s obviously where he felt most safe and comfortable and who are we to argue.

Ravi came to visit and then Dr Campbell to explain.

Here’s what was said

Ravi put camera down. It has narrowed again but only to 50% which is an improvement. He also said no sign of floppy airway below the collapse which is a great sign for reconstruction.

Ravi said he would consider the reconstruction this year or next year. He says 50/50 for success this year, probably higher next year. What did we want to do? We said we wanted him to call it and so he said let’s get results from gastro and take it from there.

Gastro attached camera to the inside of his oesophagus (there was blood coming from his Trachy 🤢) and we have a fanny pack with a transmitter in that has to be within a metre of him all the time. Nightmare. Also having to record what he eats and drinks and what position (lay, sat, standing etc) and then take him and the transmitter back for 8pm tomorrow.

Then we will have appointment with gastro for results in 4 weeks. Ent in 6 weeks and a plan for what’s next then.

The camera will be poo’d out at some point with a scan in 6 weeks to check it’s gone!

We were discharged fairly quick as Rory had a feast and was running about. Obviously recovered well!

We called at screwfix on the way home and then McDonald’s

He managed a summery stroll and a trip to the park.

Austin went to the park and to feed the ducks. He walked over 2 miles to grandma jeans house with his pram and his baby. He kept stopping and sitting down on the pavement because he was tired. Cutie!

Eventful day all round!

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