Still have not downloaded those Christmas pics - must try harder.......I'll get on the case this weekend.
New Year for Andy and I started with a bit of a hangover and hoarse voices from singing karaoke at our neighbour's house, the best therapy we needed was to belt out some Abba numbers at the top of our voices until the early hours! Daisy's new year started with a snotty cold, but she was happy enough without a temperature, just an annoying cough until last Sunday when she suddenly spiked a 40 degree fever. Previous blood cultures taken just before new year had been negative so the docs felt that it was probably just a virus, an x ray showed a bit of phlegm on her chest and they took some more blood just in case. Her temperature has stayed up for the past few days and although the ward doctors kept saying it's probably just a virus my instincts were, as always, to prove me right. Yesterday afternoon the microbiologists (who are very au fait with Daisy's various bodily fluids) phoned to say that the first culture was positive for candida and the second culture was also growing something. I was dreading a return of the MRSA nemesis but it was it's marginally less scary cousin enterococcus. A quick call to Andy to update him, he googled candida sepsis and we have now realised that this is our new nemesis. Don't google it, you'll scare yourself! Daisy's port has to come out! This is where Great Ormond Street for the first time ever have come good. With impeccable timing I had a call from Rainforest ward to inform me that her port would be removed on Monday, in fact I have never known such a flow of communication between our ward here and Rainforest, they must have made a New Year's resolution to be more proactive!
The doctors here have tried to get her in earlier as she is not well at all - her temperature remains high and she is not a happy bunny. It does look like Monday is the soonest it can be done and I don't want her transferred to St Georges for the line removal as this adds another hospital into the equation and a set of anaesthetists who do not know her well (she can keep anaesthetists on their toes by throwing little wobblies now and then). In the meantime she has been started on two anti fungal meds as well as her antibiotic infusions, it feels like she spends more time on medicine infusions than on her TPN - no wonder she feels grotty. Her vancomycin requirements are now officially those of a 70kg man and are probably contributing to the existing Epsom & St Helier Trust Budget Deficit.
Our nurse from The Children's Trust at Tadworth started working with Daisy this week. After a year of pushing by Andy and I we eventually got social services to fund some short term respite at Tadworth to give us a break occasionally. The initial agreement was 2 nights a month but of course as Daisy has been in hospital for so long she has not been able to access it. Fortunately the funding was moved to provide outreach so now we get 7 hours a week from a named nurse. It is so nice to know that I will get a day off one day a week - Jane our nurse will work alternate early shifts and late shifts so that one week I can get time off during the day to catch up on things at home and one week I can get an evening at home. My life at the moment is spent dropping Xanthe and Jules off to our neighbours to be taken to school and them coming to the hospital, staying here until about 5.30pm, picking the children up from after school club, feeding them and then returning to the hospital when Andy arrives home at 7pm and staying here until 10pm (ish) or whenever Daisy settles. On the weekend Andy and I try and juggle our time here between us. When Daisy is really poorly or staying in GOS I stay with her and Andy juggles things at home. The reality is Daisy cannot be left for long, she does not have one to one nursing at the hospital, there are other patients besides Daisy here after all!, and although the nurses keep an eye on her when I am not here they can't be with her all the time and Andy or I have to try and be with her as much as possible, both to keep her entertained and stimulated as she is still in isolation but also to do all the nappy changing/bathing & personal care she needs, and often to untangle her from all wires as she is so active! It makes me really cross that the government seems to thing that when a child with complex needs is in hospital they are being looked after and the carer is getting a break, if anything my job is more difficult as I am trying to be several places at once all the time and never quite managing it!
With the new year we have been focusing on trying to get home at some point. I keep saying to people that it will hopefully be by the summer, but it may even be around May half term time. When we are at GOS next week we hope to see the TPN nurses to get the ball rolling with getting set up for long term home TPN. The homecare team here is happy to set things up but it has to be done in collaboration with GOS as she is their patient. Knowing how slowly the NHS moves it will take a while to get the funding in place but hopefully we can start slowly by having some day release. I would love to be able to take Daisy to school for a few hours even if only once in a while. Daisy's key worker is setting up a multidisciplinary meeting with everyone who , is involved with her , from the school, doctors, therapies, social services - such a small girl, such a large entourage.....
In the meantime amid all these line infections and worries I thought we should all have something to look forward to so I have booked some more time at Chase. We have the weekend of Theo's birthday in February booked and I have also booked a week for the first week in August - the children are just over the moon at the thought of a summer holiday at Chase. It will give us the chance to have some family days out and have some quality time with Daisy without having to manage her care for a while, something lovely to look forward to later on the year while temperatures go sub zero outside and Daisy battles with another line infection while waiting for her port to be removed!
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 (45) disability (33) Great Ormond Street (19) 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)