I’m long overdue a bit of “off load” therapy on my blog here but to be perfectly honest, I just haven’t had the time to spare!! It’s been a VERY long summer for us, we didn’t manage to get away anywhere this year – apart from a trip out with our caravan just before “back to school” which was one of the most stressful times EVER!!! One disaster after another but we managed to have a good few days in the end!!
So, Amelie Jayne……….. Where do I start!! So many lovely people always ask how she’s doing and most of the time I just reply “not too bad” because the actual reply is FAR too long winded, as always!!! In herself she’s well, which is great, I’m managing to keep her ticking along with her feeds and meds and since mid-August she has managed to stay out of hospital which is even more of a bonus!
She’s had a lot of problems with her stoma – bags becoming detached and making a TOTAL mess, needing strip wash and full bed change mainly at night time – 2/3am – typical!!
But it’s her bladder that is causing us and Amelie the biggest problem. Almost 12 months ago now, she had the major operation to enlarge her bladder using some of her bowel, she had a bladder sling to help prevent leakage and had her mitroffanoff made (the channel through which we catheterise her).
The overall aim of this was to make her bladder much bigger than it was and tilt it slightly to be able to hold larger volumes of urine. She would then independently stand to the toilet, pass a catheter into her mitroffanoff and let the urine drain out, every 3 hours or so in the hope that she would stay dry and she could get rid of the nappies. We knew soon after the operation that this hadn’t been entirely successful as she leaked so much. After my last post in June, my thoughts haven’t become any clearer at all. She went back into hospital in July (just before the end of term) for more “deflux” injections into her bladder neck – as a last resort really and not feeling all that confident as they didn’t work last time.
The injections are like “fillers” to try bulk out the bladder neck to try and stop urine leaking as her sphincter muscle doesn’t work. This time round, they lasted about 3-4 days and we managed to keep on top of the catherisations and she had a good few days of being dry which boosted her confidence into ditching the nappies for a few days!!
Sadly this didn’t last long and she had several large leakages which were not nice at all for her and she insisted on going back to nappies. She suffered a lot from bladder spasms too and at the beginning of August she had just had enough. In all of Amelie’s 9years and after EVERYTHING she has been through, she has not ONCE complained but this one particular evening after experiencing another bad bladder spasm – she just broke down in tears and sobbed her heart out, saying “Why does this have to happen to me…….. I don’t want to have to do this……….Why can’t I be like everyone else……”
We’ve been so lucky that Amelie has been so resilient to everything so far, so you can imagine how distressing this was for us to hear her say this; it was absolutely heart breaking and soul destroying. What we would give for her not to have to go through ANY of it but to know that she will have to deal with this now for the rest of her life……………..well, we just feel completely helpless.
So with great support from Amelie’s urology nurse, we put our thinking caps on to see if we could make life a bit easier for her. She is unable to stand at the toilet and pass a catheter herself for two reasons – the main one being that she cannot see her mitroffanoff as her jejunostomy button sits directly on top of it, so she needs help there. Secondly, she has a lot of debris in her urine (due to having part of her bladder made up of bowel) so it just doesn’t “flow” out very well and so needs a syringe to help, which she cannot manage on her own.
We decided to try a more permanent indwelling catheter with a “tap” on the end, to try and give her back some independence. The idea being that when the alarm goes off, she can tootle off by herself and just open the tap and empty! Amelie agreed so early August we went back into Manchester and she had the catheter fitted. It all went well but she felt quite uncomfortable, we thought this would pass so carried on with lots of praise and encouragement! Same old problem though, it wouldn’t drain so well and needed the blockages syringing out which caused yet more bladder spasms. Sneaky Amelie avoiding this a lot of the time, going to the toilet by herself telling us it had drained well when in fact it hadn’t as most of it had leaked in her nappy!!
Less than 4 days later we had an extremely upset Amelie at the end of her tether with it all again and so I reluctantly pulled the catheter out and we went back to what we were doing before. Throughout most of August we have been trying many different types and widths of catheters to see which ones will drain better for her – I’ve got so confused with them all!! We have managed to find one though that works well on a night time, she finds reasonably comfortable and seems to drain well overnight – not all the time though as it gets blocked so most nights we are up syringing out the blockage or it just leaks into her nappy!!
And that’s just about where we are – I’ve fought so much with Amelie over the summer as I’ve had to drag her away from her friends, the television, or something, to “do her catheter” and it has become such a battle and it shouldn’t be like that. We have the safety net of her leaking so if we go over the time, it’s not a major problem but means that nappies are a must – and she hates them!!
It’s been a real “eye opener” and we just do NOT know what to do for the best. Amelie isn’t in the right place to make any decisions about this next operation and really doesn’t understand the impact that it will have on her. She doesn’t want any of it but has to realise that there is no other way.
We meet next month to decide what to do about the Bladder Neck Closure operation and I have ABSOLUTELY no idea what to do. SO many factors running though our minds………. Leave her a while until she’s older but that means taking her out of high school for this big operation……….. or not to have it all but that means nappies all the way with regular catherisations?????!!! Will have to see if they have any other suggestions!!
So that has been our summer – oh as well as having CONSTANT phone calls sorting out medications and supplies for Amelie – lots of budget cuts going on so we are all being TOLD (not asked) that we cannot get certain supplies anymore and that we either have to buy our own or try and request from the GP!!!!! I would DEARLY love to speak to these people who sit in their office and just DECIDE what we can’t have anymore and give them a piece of my mind!!! Better still – to come and live with us for a few days, see what we use/need for Amelie to keep her ticking over and THEN tell me I can’t have them!!
Amelie also turned 9 on 16th August and had her ears pierced!! She was very excited about this and was very brave! We went out to the carvery for lunch so she could have some of her favourite food – Yorkshire Pudding, mash and Gravy and then had a party the following month with her friends when they had all come back from their holidays!
Amelie’s big sister Georgina was diagnosed over the summer with reflux and delayed gastric emptying – like Amelie, so she is now on similar meds!!! It’s like doing drug rounds here!! So that was another lot of hospital appointments and investigations but glad they have got to the bottom of things for her and she can keep her bad sickness under control!!
So that’s us for now – not very exciting, very long winded – my apologies but thankful as always that on the whole all her health is ok and we are always grateful of what we do have. When times get just so frustrating I have a little cry and manage to put life in perspective again!
Thanks so much for all your love and thoughts for Amelie – I’ll keep you posted of any decisions made next month!! x