Brave Face

News from Colin:

"Today.............

Now 10 ml feeds - that's an ounce every three hours! The nurses used more than one bottle of Willow's expressed milk last night!

He's now started to initiate some of his own breathing without the ventilator for short periods (a few minutes each time) when he is more 'conscious' which is good as he is now less sedated (relative to the paralysed condition of the other day), and today the adrenaline has been removed to see how he goes without it. All rays of hope, but so small in the greater scheme of things.

Have talked with consultants more today. The condition Theo has has only been seen in two other babies in the last ten years - so it's rather rare!

The outlook for him is that if his body fights off the virus and gets through the current stage, then he will still be left with an abnormal heart. This will require medication for the rest of his life.

We're now expecting to be in Intensive Care for 'a number of weeks' before even thinking of moving to a ward, and then (if we get that far) it will be a life of regular hospital visits, etc etc.

I was sat next to his bed last night thinking 'if only we could get to the ward it would be so much progress'. It was almost as if Ward 30 at Glenfield was some mystical, magical fantasy land where all your dreams come true. It's not - it's a place where less sick children stay.

Today, nothing has become worse, and that has to be considered good, and what changes have happened are small but at least in the right direction. Keep fighting Theo.

Fingers crossed, then we can get through tommorrow.

A photo of Willow putting a brave face on it."


Colin


Willow has also texted me saying:

"Enteroviral myocarditis. In last 10 years doctors have only seen 2 cases. This is EXTREMELY rare. Theo is a ver very unlucky boy and we should never let him choose lottery numbers or a grand national winner!.

His blood pressure is OK, the nurses just took routine blood samples. He's done plenty of wee and a lovely big poo for the nurses.

He's been trying to breath a bit more for himself but I wish he would take it easy and not rush things"



I have also attached some pictures of Sacha and Tabby, it's not easy for them, they are missing their mummy and daddy and are confused with what's going on with Theo. My mum and myself took them to a farm park yesterday so they could let off some steam!





Locko