At long last we are back at Great Ormond Street - never thought I'd say those words but the worry of the infected line was becoming overwhelming - however we are not out of the woods quite yet. Daisy has a lovely upper respiratory infection and has been vomiting and coughing for the past few nights, she has had a temperature for eight days, due to the new line infection and is not well at all. Inspite of all of this the anaesthetist was happy to go ahead as the risk of the infected line outweighed the other anaesthetic risks. However Daisy being Daisy decided to throw yet another one of her spanners into the works - her haemoglobin level has dropped dangerously low and that risk now outweighs the line removal as it is too risky to do while she is so anaemic. So as I type she is just coming to the end of another blood transfusion, the second in about 3 weeks. She is a lot better for it and this will probably help her cope well with tomorrow's procedure - now assuming that they can fit her in on the morning list as promised....
We are all behind with her drug infusions and TPN tonight so I am gearing up for yet another disturbed night as infusions go on and off and TPN gets put up at some unearthly hour. Her blood sugars have been all over the place too - to get her through the transfusion she was given a glucagon injection at the start, in any other child this would have sent their sugars up to the roof but for Daisy it just pushed them into an acceptable range. Her endocrinologist is going to come and see her tomorrow (assuming she is not in theatre at the time) to discuss restarting her growth hormone therapy which should help her regulate her blood sugars and hopefully give her more muscle strength to cope with all of these infections.
I heard an ad on the radio the other day about giving blood and that blood banks are currently low on type O blood, Daisy's blood type. Each time Daisy has a transfusion I do say a mental thank you to the kind soul who gave up an hour of their time just for the promise of a free cup of tea and a biscuit to donate some blood, suddenly those radio ads seem so much more poignant, Daisy needed blood and it was there for her and looking at her colour tonight it makes the world of difference...
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)