I’m only on the tablet, which is being difficult, so just short updates when I can manage to get signal.
Yesterday we were told we were stable but static, in other words the fluid was not moving.
Water medication was increased, blood pressure medication added as it keeps going sky high.
There is still swelling and blood in urine.

But today
Tim watched me get up and shouted
Even with the cannula in his foot we had to get socks on him and most exciting we were allowed out to the playroof.
Daddy provided food, so he got to eat, I’ll explain that saga when I have a proper keyboard.

There is still talk of biopsy, but for now


Sorry no pics as it just won’t let me


It is NOT a reaction

OK so I know the other day I wrote about being normal or not, then I said it was a reaction. Well here is the update.

After various trips to doctors, things finally came to a head Wednesday night with a nosebleed lasting almost 40minutes, as it was over 20minutes we were told he had to go to A&E.
They were amazing took one look at him and said we weren’t leaving until it was sorted.
There was a very scary moment when they got more concerned about him and there was a sudden move to resus, but I couldn’t have asked for more from them.

At 3am with 2canulas in, fluids and antibiotics given we were transferred to Leicester Royal Infirmary by blue lights.
We have had no end of bloods taken, obs hourly, reduced to two hourly, and for tonight four hourly. Another cannula in foot this time.

So what is it?
Well to be honest no ones knows.
Nephrotic syndrome is definite, but treatment can’t be started as there are other complications which may or may not be made worse by starting treatment.
So we are playing a waiting game, every set of obs and blood result is being rung through to Nottingham hospital and there is the possibility we may have to be transferred.
hospital in bed

It is a reaction!

Following on from my post the other day Just as we thought we were ‘Normal

Here is the update

As the blotches hadn’t bothered him in the least the other day I decided to be a cruel mummy and as soon as they disappeared I gave him another cake (or maybe 2!)

Initially on the first day everything appeared fine.

The today – no spots like before and not as bright red as last time, but lots of large (at least an inch and half across) red, slightly dry looking areas, several on each leg a few on his back and one on his arm.
So looks like he is definitely reacting to something, who knows whether it was a bad/cross contaminated batch of cake mix, or the something in the can of Fanta.
Guess we wait until everything settles down again and try with him with  some fanta and see what happensDSCF6532