Never content to do things by halves Daisy decided to brighten up our Friday by tying herself up in knots with her lines until the one into her main vein snapped (which it should not do but is clearly not Daisy proof) and she poured blood out straight from her line all over her cot, at the same time she thought she would whip her nappy off and wave it around in some sort of infection party invitation! This is the nightmare with Daisy and her lines - she throws herself around when asleep as this is when she gets most of her pain and gets herself completely tangled up. I wasn't too bad when it was just her gastrostomy feed as there is less danger in pulling that out and I can replace a gastrostomy button at home but main lines into veins are a different matter......
Of course all of this happened when I had just nipped home to sort out the various musical/scouting activities that our children are involved in. As Daisy's vein access is via a portacath it could be reaccessed on the ward. Normally fairly straightforward but Daisy being Daisy it took 3 attempts! Fortunately she is currently on antibiotics and this so far has kept any infection at bay.
Her antibiotics are currently being reviewed, she has a regular prophylactic dose of one sort to prevent the recurrent UTIs caused by her bowel disease, however the bugs are now resistant to this one so we are going to have to start her on something else, always a bit worrying as her bugs can become resistant to that and our options decrease. She is already colonised with MRSA so we have to keep the big hitter antibiotics in reserve for use incase she develops an active mrsa infection.
I am full up with cold and Andy is brewing one too, so we are worried that Daisy will pick it up. The ward is full of children with bronchiolitis and while she is in isolation, she is so susceptible to infection particularly given the immunosuppressants and steroids she is currently on. In fact I have now nicknamed the bit of the ward we are currently resident on "bronchi alley" as all the cubicles here are full of little babies on oxygen - I'm just keeping the door shut and staying out of the parents' room!
We had a busy day today - a trip back to GOS to see her Oncology consultant. Daisy has had a named oncologist since she was a baby when she was suspected to have neuroblastoma. Since that time a lot more is now known about the causes of Daisy's syndrome and the associated malignancy risks - between 15 - 17%. Her oncologist was not aware of this and agreed that these risks were bigger than he had previously known and now we know she also has such extensive inflammation in her GI tract this adds to her risks. He is going to manage her screening protocols at GOS now as she is very difficult to scan normally as she has megacolon and the bowel disease makes ultrasounds quite uncomfortable for her. She had a scan today, always a worry as we do know of other costello families who have had tumours diagnosed during these routine scans. She will have them every 3 months now and will have another review with the oncologist in February.
We had to wait forever for an ambulance to transport Daisy back to Queen Mary's, it was getting very hairy as her TPN was beginning to run low and we had to reduce the run rate. Fortunately the ambulance crew had previously transported Daisy and remembered her going hypoglycaemic on them before so they turned on the blue lights to get us back before the TPN ran out, although I did need to use some hypostop on her towards the end as she was showing signs of low blood sugars. We're due back at GOS for another outpatients appointment in 3 weeks so we'll take some emergency fluids in case we end up staying there longer than anticpated. Life was so much easier when all I had to remember was a dummy and some nappies, it becomes a fairly exclusive club when your main means of transport is ambulance and you carry around spare bags of saline with 10% dextrose and tubes of hypostop.
Anyway, as Daisy is actually asleep for a change I'm going to turn in, she has had paracetamol and codeine together tonight so this should kick the pain into touch for a while...fingers crossed for a quiet night
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 (85) costello syndrome (43) disability (32) aspergers (19) TPN (18) cancer (18) Great Ormond Street (17) 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)