It’s been a great few days, lots of people have been doing amazing things to raise money for Toby’s Trust, we’ve got to know new people and in general Toby has been on the best form he’s ever been.
He has started to cruise a lot, he’s more comfortable standing up, he’s bright and alert and a real joy to be with.
We’re now used to feeding him through the PEG and he’s tolerating the Ketogenic diet well, it seems to be having a positive impact as his partial seizures are almost gone and he’s ‘only’ having a seizure once a week or so.
A lot of the time you can forget there’s anything wrong with him, he’s just a little boy who enjoys noisy books, crawling around and being chaotic.
And then your legs get kicked from under you and you have a reminder of reality.
We’ve always said that Toby’s oxygen saturation is low but no one real listen or cared. We’ve pushed a little harder lately and had a sleep study done over night and the results aren’t good. On average he was at 88% oxygen when the minimum should be 92%. He dipped a lot lower than that frequently.
This isn’t good.
It could be contributing to his low muscle tone, his mood and general wellness.
So, we’ve got a whole new series of tests, investigations and possible outcomes to look into while the doctors try and find out what is causing the low SATs and what can be done about it.
In the meantime we’ve got to keep him on oxygen all night, easier said than done when he won’t tolerate a mask on his face or nasal prongs up his nose. One possibility is a nurse being employed overnight to make sure his oxygen stays near his face all night.
We’re exceptionally fortunate to live in a country where this is even a possibility but it’s still a big leap, having a stranger in your house while you sleep isn’t a nice feeling but I guess it’s just the next hurdle we’ll have to get over.