Last night was our first night home, yipeeeeeeee we all cried, but coming home has the huge pressure of responsibility and when you have had all drugs feeds and care done for you in hospital the thought of managing it all again is very daunting (even though you’ve been doing it and managing it for an age).
I was doing really well happy to be home waiting for Joe to return, then I split 200ml of milk, I should have taken that as a sign.
The pump then started to play up AGAIN, and things went downhill from there. Now you will understand the title of this post…….. A friend, wonder what the dictionaries description says, anyhow my definition: someone who drops everything, drives up to Russells Hall Hospital to collect a borrowed pump from the children’s ward, brings it round, sorts me out and makes me a cup of tea 🙂
Thank you Su x
Jude is back home and is well.
The last month, however, has probably been the worst we’ve had to endure. And then some.
As already told, the first gastrostomy failed. On top of that it created an abscess. And then there were all those respiratory arrests which while causing no harm (other than to our nerves) add a new dimension to worry about in future.
The new gastrostomy sits happily in situ, the old site stiched up and this one was put in place by ‘proper’ surgery rather than the key hole version before. The wound is clean and healthy and doesn’t leak.
And I’ve debated with myself whether to post this.
It is not perfect.
The plan was always to replace the 6 inch tube currently sticking out of Jude’s tummy with a button which sits flush to his skin. We were told that because this second one was put in by surgery he wouldn’t need further surgery to insert the button. As he has reacted really badly to surgery in the past we had hoped we could avoid another week like we’ve had recently.
They have put the wrong size in and they don’t think there is a button that will fit what they’ve inserted. It might be the case that he will need further surgery to have a button in place.
A bridge we would prefer not to cross.
It’s not the only thing that wasn’t good this admission – he’s due to go back next week for his ACTH and a few things have knocked our confidence a little. HDU are great, no complaints and that’s where we will be next week hopefully – but a couple of mistakes made elsewhere were avoidable one of which could have been very serious. They need to step up to the plate and make sure that Jude’s care is A1. Anything less and we may not be so tolerant next time.
There’s a description of gastrostomy here and Jude has the baloon type. They didn’t want to use this type first time round as it can be less stable than the PEG until the tunnel from outside to inside has ‘healed’ – a bit like a pierced ear does.
Over 24 hours now since Jude last ‘misbehaved’. The gastrostomy site which oozed so much nastiness last time is clean, dry and painless and from a surgical point of view he’s free to be discharged.
…but, today was meant to be when he started ACTH and that hasn’t happened and we are still waiting for a decision on that.
Quite happy to have survived.