Apologies again for not updating more frequently - I'm sure I'm breaking the European Working time directive rules on the number of hours I work, on an unpaid basis, nursing Daisy, let alone looking after the rest of the family....
Again, so far, so good - apart from the usual dramas our lovely daughter throws in our path. This month's rare occurence which befell Daisy was a 1cm hole in her hickman line. As you can imagine a hole in a line which goes straight into her heart is not desirable so as always we had panic stations.... I noticed the problem when flushing her line on a Friday morning (it's always a Friday!), there was a strong smell of TPN in her room and when I flushed the line I saw the hole. I now know that repairing a hickman line is not straightforward, initially, in my naivety, I thought it was a case of calling the community nurses to come and carry out the repair, obviously not. There are limited people who can carry out hickman line repairs, and no-one in our local NHS trust could do this. In fact, I have since discovered that in some areas a repair would not even be attempted, instead it would be a case of removing the line and inserting a new one. As you have guessed, it was time for another trip to Great Ormond Street and a three hour stint with their fantastic nurse practitioners who, after a couple of false starts, repaired the line....
Of course it shouldn't have happened in the first place, holes in hickman lines are rare, especially in such a new line, but rare and Daisy go together! And as always her timing was impeccable - not only was it a Friday, but Andy's parents were due to arrive from Scotland having not seen the children in a year and Theo was due to return home from his Ocean Youth trust trip. Major multi-tasking and, as always, wonderful help from Chase hospice, and everything was sorted in time.....
Apart from this drama, our month has been spent trying to get back to some semblance of normality as a family again. We have all spent a year living on our nerves and separated from eachother, and the scars run deep. While superficially it looks like the children have coped well, Andy and I have realised how difficult it has been for all of us. Theo had his first year of high school with minimal support from his parents, often coming home to an empty house and cooking a meal for himself. Jules and Xanthe went to after school club or to friends houses. Andy and I were like ships that passed in the night putting all our energy into the children. Now we are all just relishing being under the same roof and enjoying the simple things....Theo is loving having his parents there when he comes home from school, Xanthe likes our pampering evenings, Jules is able to have friends back home to play. Daisy remains the centre of attention, but in a positive way. Andy and I are happy to be back home, able to catch up on TV together and share a joke....
Life is still tough but at least we are all at home. Every day I spend an hour in the morning doing the TPN and meds and getting Daisy ready for the day, the same again at night....It is physical work that requires maximum concentration. Before Daisy's deterioration she was on 24 milk feed through a feed pump and around 13 different meds a day. Now the feed pump time is reduced to 10 hours but she then has 14 hours on TPN and still the same number of meds, just different ones...ontop of this is her physical problems, her splints, without which she can no longer walk, the pain at night, the yet to come health problems.
She now goes to school for four hours a day and the benefits show on a daily basis. She is becoming more and more vocal and cognitively is really bright. The school is going to start progressing her from using makaton to British Sign Language as her brain works quicker than her ability to acticulate herself. We are really hoping that in arming Daisy with the skill she will benefit in the long term as she can really get across her feelings. Of course this will mean that Andy and I will need to learn BSL - we are really excited about this prospect.
After half term Daisy should go to school full time - paperwork and bureaucracy permitting! The next battle will be to sort out transport to get her to school and back as most children in special schools are taken there in buses and taxis . Daisy will need an escort, so this will be put to yet another committee for funding approval.....This is what drags you down as a parent of a disabled, medically fragile child - you spend your days fighting to keep them alive, fighting for the best for them and it all boils down to paperwork, panels and case conferences, none of which,you, as a parent, have a say in....
I do sometimes wonder if Andy and I were not so articulate, educated and determined to cut through all the red tape which prevents our daughter getting what is her right, how she would do......
Anyway, as I said, so far, so good, we are staying away from hospital and doing the nursing stuff at home, life is better, we are all together ....
Websites close to my heart
- Shooting Star Chase (Daisy's Hospice)
- Great Ormond Street Hospital Children's Charity
- Torbay Holiday Helper's Network
- Sick Children's Trust
- Daisy's Angels - Facebook Page
- About Costello Syndrome
- Asperger Syndrome
- Caudwell Children
- Together for Short Lives (Children's Hospices in the UK)
- Costello Syndrome Support Group
- Give Kids The World
- PostPals - Putting Smiles on Sick Children's Faces
- Singing Hands (Daisy is their No1 Fan!)
special needs (86) costello syndrome (46) disability (34) Great Ormond Street (21) aspergers (19) TPN (18) cancer (18) carers (16) parenting (14) autism (10) shooting star chase (9) children's hospice (8) Blogging (6) family (6) SEN (5) hospice (5) Mitrofanoff (4) diagnosis (4) BIBs (3) Britmums (3) Neuropathic Bladder (3) communication (3) holiday (3) benefit cuts (2) david cameron (2) gastroenterology (2) singing hands (2) travel insurance (2) BSL (1) Child Hospice (1) Colectomy (1) antibiotics (1) benefit scrounger (1) bladder (1) france (1) health (1) line infection (1) makaton (1) portage (1) siblings (1) sign language (1) sign supported english (1) ultrasound (1)