It's pretty normal to suddenly discover Aran in the frame when we're doing a photoshoot...

 

 

... even if at times he gets a little help from his Dad.

 

 

And there are days when I wonder.....

 

 

... whether I've got two kids, not one.

 

Posted
AuthorWoolly Wormhead
6 CommentsPost a comment

still can't get my head round our boy turning 6!

 

 

May your day bring even more Lego, dude x

---------------------------------------------------------------

Aran's still not back to school. He still has acute post-streptococcal glomerulnephritis, and we're still on kidney watch.

We met his new UK consultant the other week, and they've shown us how to test at home, and to keep a diary of results, so we can monitor the blood and protein levels and keep an eye on possible infections. Their only real advise was to keep away from anyone with Strep, as even the mildest of infections could hospitalise him again and be a total game changer as to whether he makes a full recovery or not. Since December Aran's had 3 Strep infections; we're not willing to risk another. We're in the habit now now of getting straight into A&E at the first sign of infection, and that can make a big difference.

There are still microscopic levels of protein and macroscopic levels of blood in his urine. We're told that it can take up to 6mths and 12mths respectively for these to clear up, and if after that time the kidneys aren't back to full health, they declare chronic kidney disease. What that entails we don't really know yet.

90% of kids do make a full recovery, and they feel his chances are good, but naturally can't say much more as it's such a long recovery road.

We've mostly settled into our new routine of no school or large parties, of managing playdates with his friends and their understanding parents, of regular urine testing, and nagging about drinking water and keeping a low salt diet. Apart from being slightly underweight and looking tired easily, you wouldn't really notice anything different about him. Spring has come early and Aran can play more outside, which has made dealing with the whole situation a lot easier.

But every now and then it catches up with us, and I find myself falling apart when I think about how our boy hasn't yet made a full recovery from pneumonia, and that the longer this goes on, the chances of that happening reduce. It breaks our hearts, but we're dealing with it.

Posted
AuthorWoolly Wormhead
CategoriesOffspring, Tom

Thank you for all that you do, but especially for being the best Dad our boy could ask for. Love you! 

Oh, and welcome to Middle Age ;)

Posted
AuthorWoolly Wormhead
CategoriesTom

We're all very, very happy to now be home. And mightily relieved.

Aran was discharged late tuesday morning after 10 nights in hospital. And an hour or so before being discharged he managed to fall backwards over his toy bag and give himself a black eye.

Reading and translating the discharge papers tells that alongside the Bronchal Pneumonia, Aran's also had Acute Hypocomplementemic Glomerulonephritis, slight ACR. In short, a not uncommon post Streptococcal reaction became quite worrying due to an immunodeficiency, whereby too much complement (an immune protein) flooded his kidneys and lead him towards renal failure. This at least is our understanding of what's gone on - it can be hard enough to get your head round all the medical jargon in your own language, let alone with a language barrier!

We've a few more days of antibiotics and the pneumonia has all but gone. But it's the protein levels and kidney function that we're monitoring now, and we've a strict no-potassium-reduced-salt diet to follow until we're told otherwise. We all expect him to make a full recovery yet there's a slight chance of chronic kidney disease, so the no-chocolate-no-bananas fights will be worth it in the long run.

We're all very tired and it's taking a while to decompress but we're getting there!

I'm not expecting to get much work done over the next few weeks, and things are piling up. Thankfully I'd put the brakes on just about everything at the end of 2013 and there are very few deadlines this early in the year!

Nothing beats being home together again. Even the round ball of white fluff is pleased to have her family back again.

Posted
AuthorWoolly Wormhead
CategoriesOffspring, Tom
5 CommentsPost a comment

If you follow me on Twitter you'll probably be aware that we're camped out in Bologna hospital with Aran. Just over a week ago, after a restless night and an exceptionally high fever, we took him into A&E to learn that he'd got pneumonia. It didn't end there, as he developed a complication, a post Strep immunological reaction that hit his kidneys pretty hard.

Things are on the up; the antibiotics are doing their thing with the pneumonia and Aran's renal function has now stabilised, thankfully without the need for dialysis or a biopsy (which we feared might be needed). He's an appetite again, has stabilised in weight and temperature and is much more his usual self.

The kidneys are slow to respond though, and we're going to be here for a few more days at least before we start to see an improvement. The doctors here are specialists and know exactly what they want to see before they even think about discharging us!

This also means that I won't be returning to work from monday; I'd say at this point it will be another week at least, if not longer. We're now connected to the free patient wifi and we're posting updates to keep everyone informed (Twitter mostly, and personal FB pages). If you're waiting for an email from me please bear with us! (I'll try and get auto replies etc updated but we've only got our phones to work with)

Thanks so much for your patience, and every message we've received is very much appreciated! Aran's going to be fine, he's over the worst of it now :)

Posted
AuthorWoolly Wormhead
CategoriesOffspring, Tom
11 CommentsPost a comment