I am full of mixed emotions – so much going on, good and bad, thought I would fill you in!
Amelie has been home from her long stay in manchester for 6 weeks now (which has gone remarkably fast!) and has settled back into home and school life, as much as she did before. As you know, she came home with a central line in and was having IV fluids 3 times a week which I was doing for her, in an attempt to try and hydrate her a bit more to relieve her headaches and tiredness. The original plan was to try her on some parenteral nutrition to boost her calorie intake which is less than half of what it should be but a last minute decision from the Gastro consultant saw her trying IV fluids instead.
The gastro team wanted her back in two weeks after her discharge for a 2-3 week stay to try and wean her off the fluids and try to increase her milk feed through her jejunostomy. Aside from the fact that no beds were available to admit her, Jon and I were very reluctant to take her back to try something that has failed on many, many occasions before. So it was agreed that she could stay at home, I was to stop her IV fluids and they would review her in conjuction with our local dietician.
We have an appointment to see our local dietician in two weeks time (8 weeks post discharge) but I have been trying to gradually increase Amelie’s jej feeds (as promised) at home. this has been very unsuccessful and again – as previous attempts – has been counterproductive as after about 5 days of the increase she has an upset tummy and her stoma output goes crazy. She has stomach pain, feels unwell and loses more out of her stoma than we are actually trying to put in!!
She is due back into manchester next Monday to go to theatre for some injections into her bladder to try to get her to “hold onto” the urine in her bladder. We will know later that day or night if it has worked or not – so fingers crossed!
Amelie has being going to school but has started struggling again with tiredness, headaches and tummy aches, so we are pretty much back to where we were before this last admission.
Last Wednesday Amelie’s nanna, my mum, had a fall and broke her left hip. So that’s been a worry for us all – she has been living in constant pain for the past 7 months and is waiting for surgery on her spine to try and release trapped sciatic nerves. This will have to now wait until she is recovered enough from her hip replacement surgery. We went to spend some time with her on Mother’s Day and it was strange to see Amelie sitting on a hospital bed but NOT being the patient for a change!! Was lovely to see you Nanna x
Our other big news is Amelie’s bedroom!! As some of you will know, Amelie’s OT applied for a Disabled Facilities Grant (DFG) to help us extend Amelie’s bedroom to accommodate a height adjustable changing bed and also for her stair lift, just over two years ago now. We ended up funding the cost of a stair lift privately with money raised from the First Friday Club last year due to having to wait up to three years. I have been fighting for a refund since then after receiving a call from the council less than two weeks after we had paid and it had been fitted – saying their directive had changed and Amelie was eligible sooner??!! I want to use those funds on other things she needs.
We also haven’t had any joy with the bedroom extension either. Many emails, phone calls and meetings have left me upset and angry beyond belief. The communication from the Accessible Homes Agency has been appalling and all the time they don’t reply and help we are left struggling having to sit on the tiny space of floor in Amelie’s bedroom or completely twisted on our bed when we have to carry out her cares multiple times every single day.
Below is an example of only SOME of the things we use for Amelie an a day to day basis. Bedtime routine can take over an hour or more each night and is made more difficult with the awkward positions we have to be in to do it all.
I know we haven’t been waiting as long as other families I know but I’d had enough, so a 5 page complaint went into the Council – will wait to see what their response to that is!
In the meantime – we had another Knight in shining Armour come along in the form of Popsie Singh who’s company MBE glazing wanted to help out a local cause and they chose Amelie!! I just couldn’t get the words out when he offered to organise and pay for the extension we needed!! I still can’t – I hope he knows what a MASSIVE difference this will make to us and Amelie – thank you just doesn’t cover it!!
So yesterday – work started on our house! Scaffolding went up, tiles came off the roof and it’s all go!! The amazing team from Fisher & Haynes Joiners and contractors have got off to a flying start! Lovely guys and they don’t mess about!!
So apologies to our neighbours – please bear with the noise and the vans near our house – fingers crossed it won’t be for too long!!
So that’s where we are at!
- Amelie to theatre next Monday
- Amelie’s bedroom underway
- continued battle with her nutrition
- Making sure Amelie’s Nanna has a good recovery
AND………… for me to get cracking with It’s a Knockout !! Double event this year – 25th and 26th June!! Will post more details on the Fundraising blog soon!