So yesterday I took Amelie back to Manchester to see the Consultants about her bladder – 3 months after having the “deflux” injections in the sphincter muscle at the bottom of her bladder. The theory behind that was to try to “bulk out” the muscle to try to make it narrower as it doesn’t work at all so is constantly “open” which results in constant leakage.
It worked for a day!! That was all – one day she was dry and then she began to leak at each catherisation – more and more over the following days, weeks and months. We tried reducing the time of her catheters – every three hours in the hope we could keep her dry that way but that wasn’t very successful either – as well as being VERY restricting on daily life.
The operation she had back at the end of November last year managed to increase the size of her tiny bladder and it now has the potential to hold up to 200mls rather than 30-60mls. She now has the mitroffanoff which works fine – the channel created by her appendix so we can put the catheter in through this directly into her bladder and syringe off what’s in there.
The trouble is her sphincter muscle. Most of us when we “need to go” can squeeze and hold on – Amelie’s muscle just sits there open all the time and what makes it more difficult is the fact that she can’t “feel” when her bladder is full either – mainly due to the fact that her spinal nerves have been damaged by her scoliosis but also probably because it has never been able to be full!
I was hoping for some new ideas, some different suggestions as to what to try next but unfortunately there are no more options. That is of course apart from the operation to completely close off her bladder neck – which guarantees 100% no leakage and Amelie would be finally rid of nappies.
This to me was something we wanted for her back in Nov/Dec after we found out the bladder sling hadn’t worked and that she still leaked. Now though after months of regular alarms on my phone reminding me that it’s “catheter time” – the stark reality has hit.
Because there wouldn’t be anywhere for her to “leak” the catheter becomes a VITAL part of her daily life – when it’s time – it is TIME, no matter what we are doing, where we are going, everything must stop to empty her bladder to prevent it from getting too full and rupturing.
At the moment on a night time, Amelie wears a nappy and it catches the “leakage”. If she were to have the operation we would have to tape the catheter in overnight and connect to a larger drainage bag – every night for the rest of her life. There is no going back after this is done – this is forever.
The Consultants then asked me if this is what we wanted to do???!!! Suddenly I felt panicked – this is a major life changing decision for Amelie – all sorts of scenarios went running through my mind………
The main one being will she resent us making this decision when she’s older when she’s out drinking and has to take catheters with her and remember when to “go to the loo”??
Will she mind if she’s at sleepovers at friends’ houses when she’s older that she has to have her wee draining into a bag all night?
Will she find a boyfriend who will accept her as she is (colostomy, urine drainage bag etc etc) and will she be embarrassed??
The mean reality is though – it’s either this or staying in nappies for the rest of her life – pads when she’s older but pull ups overnight etc – there just isn’t another choice.
We talked it over with Amelie as best we could but how is she to know or realise what this means when she is older??
Her mind is completely made up – she wants the surgery and wants OUT OF NAPPIES!
I just wish I could see things so clear cut! All I see is another 9 hour operation and weeks in hospital and her resenting this decision when she’s older.
I know in my heart that Amelie will deal with this in her usual way and just get on with it and I will look back and wonder what on earth I was so upset about it for but it’s one hell of a decision to make – so final – when it’s done – that’s it – it cannot be reversed. She will have to catherise for the rest of her life and have a drainage bag every night of her life until she’s an old lady (her words, not mine!!)
I know it’s not the end of the world and some of you are more than welcome to tell me to get a grip!! I just wish there was another way…………..
The conclusion of yesterday was that she will be booked in for more deflux injections in the next month or so – “just to try once more” but they will plan to go ahead with the bladder neck closure operation before the end of the year – unless we decide otherwise.
Sorry it’s long winded – think I needed to write all this down to get my own head around it! I know Amelie is loved by all her friends and family and that they and we will support her through everything every step of the way and for that – we will never be able to thank you enough x x