Things moving on at the Royal

On Sunday 28th September...

I had some lovely visitors at the Glenfield right before I left. My Uncles, My Aunt and my cousin all came to coo.


It is so nice for me to meet people. It has been a really sad thing for our family not to be able to introduce me to friends and relatives. I am looking forward to seeing you all at some point, though you will have to forgive me if I dont remember your names.


Because Tabitha's birthday was on Monday, she had a load of presents and a cake on Sunday.

She loves Peppa Pig and her very talented Auntie Rainy made this cake for her. Tabby also loves Fifi forget-me-not.

Sacha had an excellent weekend with his Dad, Ben, in Lancashire. He saw a firefighter demonstration which he reported to be wicked.

The week started with my transfer to the Royal.
Well they weren't fibbing when they said the staff at the Royal were better at weaning ventilation.

Mummy and Daddy were under the impression that, following the tracheostomy, it would be about a month before I would get onto the 'Nippy' and then a lot longer before I could get off of that. The Nippy is a smaller, more mobile ventilating machine that does almost everything the big machine does.

I got my first taste of the Nippy on Wednesday and quite frankly, its fine. I am managing pretty well as the Doctors reduce the oxygen percentage and the volumes and rates that the breathing is at. I am doing more and more for myself. I got my, erm, nappy in a twist this afternoon as I've got another fungal infection and my temperature spiked so the oxygen went back up again.

Sort of hyperventilating - but another lovely cuddle with Mummy settled me right down again. I'm used to the 2 steps forward 1 step back progress though.

Most of my medicines are going into my tummy now. I have 18 different regular medicines to keep me going. Some are for my heart function, some are for blood pressure, some are for keeping me calm and pain free, some are nutritional, like vitamins and iron. I also have supplementary antibiotics and antifungal drugs.

My infection is quite a worry to the Doctors and they are thinking of arranging a CT scan to have a thorough look right through my body to make sure there are no 'nodules' of fungi anywhere. or other nasties.


Mummy and Daddy keep freaking out when they come in. Mummy was very tearful on Thursday - everything gets to her sometimes - so I gave her a long hug. Basically, because I am being stable, and the medicines are no longer on drips, the information they have relied upon - visual statistics on screens and digital displays - are no longer there and it is frightening because they cant instantly judge how well or poorly I am doing. But they have been reassured that there are plenty of signs to go on and the ICU nurses are there 24 hours a day.

Mummy has managed to find a childminder for Tabby but she cant start to care for her for a few more weeks as she is not yet available. Please, if you are able to help any day of the week, let Mummy know. Mummy is ever so grateful to all those who are helping already.

On behalf of Tabitha - thank you for all the lovely presents and cards and clothes.

Love Theo x