I know my recent posts sound upbeat but they really disguise the severity of the situation. Daisy has MRSA in her bloodstream, she is on massive amounts of toxic antibiotics, her bowel is diseased and inflamed and we cannot feed her via her gastrostomy so we have to use her main line to give her TPN. It feels like we are trying to put our lots of fires at once, every time we sort one another one starts. Clinically she looks well but her bloods tell a different story. MRSA has become our nemesis - she was colonised with it on a hospital stay 14 months ago (not Queen Mary's, you work it out) and it stuck in her gastrostomy - the perfect breeding ground for bugs. While it stayed in her gastrostomy it was fine - lots of people are colonised with MRSA and don't even know it, on it's own it's not something to worry about. However if it gets into the bloodstream it can cause a problem - not that great a problem if your immune system is working OK and you are well, but if, like Daisy you also have a permanent line into a main vein and are on massive amounts of immunosuppressants and steroids this is a bad combination.
So ever one to move the goalposts, Daisy has now ensured that the priority is to sort out the MRSA - there is a big meeting on Monday of all the microbiologists and various doctors who may be able to work out a solution. She is on huge amounts of toxic antibiotics to try and contain the infection and clinically she is doing really well. Apart from the high temps last Thursday she has stayed well and bright. We know that children with Costello Syndrome metabolise meds differently and respond diffently to problems (and sometimes in a positive unexpected way as my friend Lisa reminded me in a recent email!) - so Andy and I are just hoping that Daisy will suprise us.
Then the next priority is to get us all to Chase Hospice for her Christmas and Birthday and then we have to get back up to GOS to find out if her gut will ever work or if we are facing long term TPN - all of which will radically shorten Daisy's prognosis.
I have had a lot of wobbles over the past few days and for the first time ever burst into tears infront of her consultant and dietitian, both of whom as mums themselves have become close friends over the years. Christmas is so important, this may be the last one we have with Daisy and everyone is doing everything to make this happen.
We have had lots of scares with Daisy before - when she was born and when it was thought she had neuroblastoma, but there are too many things going on at once and we are playing a very fine balancing act. However, Daisy has suprised us before and we are relying on her to suprise us again and defy the odds.
We were lifted yesterday afternoon however by the news that her Consultant from Great Ormond Street is coming today to meet with the team here and discuss Daisy's case. This is fantastic news - she has an amazing team looking after her and clinically is stable. We all just have to stay positive (and this goes for people reading this blog!) and be determined that Daisy will be OK!!!!!
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 (44) disability (33) aspergers (19) Great Ormond Street (18) 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)