With one week to go my mind is full of so many thoughts! Primarily, Amelie’s impending life changing surgery and all that goes with it but also the amount of organisation a long stay in hospital requires!! We are not sure how long her stay will be – fingers and toes crossed we will be home in time for Christmas but I have to prepare for the possibility that we may not be, or that we will be home the day before!!
So Christmas has had to be bought, wrapped and organised VERY early (for me!) this year but I still have so much to do! We have to take all Amelie’s equipment with us – syringes, tubes, caps, giving sets, colostomy equipment, catheter bags, pumps, chargers etc etc – so it’s a bit like packing for holiday – but not ending up in the sunshine!!
Amelie’s operation will be at Manchester children’s hospital and so for those of you who are familiar with the dreaded M62 – “nipping home” to grab forgotten things is not an option, without sitting in traffic for 2 hours plus!! We might need a removal van at this rate!! Clothes, toys and everything else will need to be packed!!
Big thanks has to go to my Dad who is travelling up from Dorset to stay with Amelie’s sisters for a week at home and then Hannah who will move in at home for another week! This means that Jon can stay over with us so we can both look after Amelie. A huge timetable still needs to be made to help George and Abby carry on with their lives while we are away – I don’t want them to miss out on their many commitments! Thanks in advance to all our friends who have offered help by way of lifts etc to get them to where they need to be!
So, last week Amelie had an MRI scan, after this we went up to the ward and had a good chat with the renal nurses and the ward’s play specialist who helped us understand more about the operation and what to expect afterwards. Many of you have asked what she is having done – the answer is not a straightforward one – so I thought I would explain – with pictures!! Will help me absorb it a bit more too!!
The play specialist went through everything with Amelie and showed her what to expect to be “attached” to her when she comes back from theatre. She will have a temporary catheter in her Mitroffanoff (which she has decided to nickname “Millie”), this will stay in for about 4 weeks to allow the “channel” to heal and not heal closed on itself. She will also have another suprapubic catheter which will drain the urine for the next 4 weeks, a wound drain, an epidural, a central line, a naso gastric tube as well as her gastrostomy being on free drainage and various other wires!! Amelie liked the wound drain and asked if she could have one to play with in the bath!!
Then it’s up to Amelie’s body to recover from the surgery – as we know from previous experiences, Amelie’s stomach and bowels go into “meltdown” when they have been messed with – so it all depends on how long they take to recover as to how long we stay!
We then go back after 4 weeks at home and stay for another “few days/weeks” (how long is a piece of string!) to start the tricky bit!! The nurses will clamp Amelie’s catheter, remove her temporary catheter in “Millie mitroffanoff” and slowly start to train Amelie’s bladder to “hold onto” her urine! This will be a shock for it as it has never done this in 8 years!!
The idea will be to pass a small catheter into “Millie” – stand over the toilet and let the urine drain out! The picture shows what a “Millie” looks like when it’s all healed! Amelie practised doing this on a teddy but wasn’t quite sure about the fact that she would be doing this on her own tummy!! Am so sure she will get the hang of it -Yvie (the play specialist) reassured Amelie that this will not hurt her as the appendix doesn’t have any nerves so she shouldn’t feel a thing – a bit like cleaning her colostomy!
Because the surgeon will have used some of Amelie’s bowel to make her bladder bigger – we will need to do a bladder washout twice a day to ensure she doesn’t form any bladder stones! The bowel, by nature, produces mucous and will continue to do this while being part of her bladder. These mucous deposits need to be washed out regularly as if left they can form the hard deposits which make bladder stones!!
So that’s it – I think!! There may be other issues that arise along the way – with Amelie that’s almost guaranteed, but we will tackle them head on and get through this to ensure she gets rid of her nappies and starts her new way of “going to the toilet”!!
Amelie is quite looking forward to her stay as Yvie told her all about the Christmas preparations she can be involved in – the christmas parties, the carol singers and famous visitors!! She can’t wait!! Just hope she will be well enough to join in!
I will keep you posted via our facebook page which is under the “Live News” link. Must go – loads to do! apologies for not sending Christmas cards this year – I will donate instead to charity, hope you all have a great Christmas and hope we will be back home to see some of you before then! x x