Being home has been great, I don't like even going back to hospital for check ups now, I give mummy a hard time until she gets me back in the car, then I'm nice again! Since discharge I've not had any re-admissions (2 near misses though) and only have to go for fortnightly check ups. I still have weekly bloods just to make sure nothing is going wrong in between check ups.
The past month I've been having problems with urine infections again. Klebsiella keeps growing which can be a nasty bug if left untreated. I'm now on my second course of IV antibiotics in 1 month for this infection which just won't go away. I'm awaiting a scan of my kidneys to see if I have any kind of damage and to look at whether my bladder is emptying properly and to also see if there's any kind of reflux or anything that could be causing all these urine infections. Other than UTI infections I've been free of any other infections. My consultant amongst others can't believe how well I'm doing at home and also how I've actually managed to stay at home since discharge.
I get 2 hours off my TPN now which is a massive improvement. Earlier in the year, 3 minutes off TPN was long enough for my blood sugars to drop!! Time off my TPN will help my liver so its great i can manage the time off. At the minute though, I'm not managing to maintain my sugars, could be the infection, we don't know. Hopefully once I'm off antibiotics my sugars will be good again.
We've been up to al sorts since getting home, a break in Legoland, trips to Trafford centre, seeing family, shopping, meals, cinema,
days out.. List is endless (can't remember a lot of it because we've done that much).
Everyday I'm smiling, family life is great. Mummy says I'm cheeky naughty, she's probably right!!
On Wednesday I'm starting back at school!! I'm going to be doing 1 afternoon a week up until Christmas, then we are going to reassess and see if this can be increased. I love school, it's been so long since I was there. We went to visit last week, all the teachers couldn't believe how much I've grown!! It's amazing what happens when your fed and finally getting nutrition.. Mummy isn't best pleased though as I've had to have a whole new wardrobe and shoes too!!
I'm sorry it's been so long since I updated, it's just been great being home! I've put a few pics on, see what I've been upto and how happy I've been..