I hate rollercoasters, why would anyone pay good money to scare the living daylights out of themselves all in the name of having fun....so why are we still on this non-stop rollercoaster feeling like it's Groundhog Day over and over? Week 13 in the Big Brother House and Daisy Nimmo is still doing time in her cubicle on Rainforest Ward....
Where to begin, this is truly the worst stay ever and probably because of events that have panned out since my last post. Daisy got the catheter eventually - ironically it was a perfect example of when poor communication works in our favour. I was sitting having coffee with a friend when the ward sister called me on my mobile to say that an anaesthetist had arrived and did I know anything about a catheter insertion slot that afternoon? Turns out the Urologists, who had been waiting for a "special type of catheter" for Daisy had booked her an elective surgery slot but completely forgot to tell the Gastro Team, Ward doctors or ourselves. At least the fact that Daisy has a non- functioning gut was another factor in our favour as she was good to go for surgery that afternoon.
And so the catheter was inserted and the cystoscopy showed that her bladder was inflammed as a result of repeated UTIs. Not suprisingly the catheter was not the magic cure all, in the same way as her ileostomy, it has proven to be a necessary evil throwing up more problems. Daisy experienced a lot of bladder spasms, blood and pain from the catheter and has been maxed out on pain medication, however at least we have been able to drain away the excess urine which her bladder was not able to empty and hopefully prevent any more UTIs.
The friend I had been having coffee with when we got the call for the bladder surgery is another mum who has shared a similar path to us, both at our local and at GOS, but living through the rollercoaster ride of cystic fibrosis with her daughter. We live locally to eachother and through our shared experiences and lives have become very close over the years, so I was happy but sad when I had a text from her to say that "my drinking buddy was back" this meant her daughter was being readmitted after only 5 weeks at home but at least I would have a kindred spirit with which to share a bottle of red at the end of a testing day.... As it was I was so glad I was there as later that week, and completely out of the blue, she was told that there was no more that could be done for her daughter, her lung function had deteriorated beyond help and she had only days to live. Sadly she gained her angel wings on Tuesday on the ward at GOS and is now resting peacefully and breathing easily again at our wonderful hospice, Chase, while her family come to terms with life without their little girl....
As you can imagine this has thrown up a multitude of emotions for us, sadness for a friend grieving for her daughter, grief at the loss of a beautiful little girl, fear at the possibility of our own loss.....
And in true Daisy fashion, just as my stress levels were being maxed out on the rollercoaster she throws another spanner into the works but spiking high temperatures and sepsis. For 6 days Daisy has been spiking high temperatures, vomiting and having episodes of rigour and sepsis, she is on 5 different IV antibiotics and an antifungal and not responding. Her blood cultures are negative and the experts in GOS are scratching their heads. She has five different sources of infection - a hickman line, a gastrostomy, a surgical jejenostomy, an ileostomy and a supra pubic catheter so where is the infection coming from? Correct that, actually it's four sources - the supra pubic catheter came out before a viable tract could form and she is booked for another surgical insertion next week.....
The assumption is that the infection is from the line but if we remove the line we limit her options for further line insertions. Today was spent discussing with surgeons and doctors whether or not to remove it...I am constantly being forced into making decsions which could have serious consequences - if we keep the line will the infection overwhelm her, if the line goes will we reduce options for line insertions. What if we are missing something by focusing on the line? What if it is an inflammation of her heart valves? or appendicitis? Daisy does not present in the way text books say she should, all we know is that her inflammatory markers are rising and she is not responding to antibiotics. However during the day she is still smiling and still interested in the TV and this gives me hope.
I have told the doctors that everything must now be focused on getting her into a stable and safe position so that we can transfer for a planned stay at our hospice on 29th May - we need time together as a family and this is our number one priority. This week's events have shown us that we have to seize every opportunity to be together as a family. The doctor's know this, they know that time is precious for us, and this is where I get my strength , by focusing on the most important thing, getting us all back together again.
This post is dedicated to a beautiful little girl, Alica Roa, age 10 years 5 months, who lived life to the full and to her fab mum Catherine, a true friend (& drinking buddy!) - xxxxx <3
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 (65) costello syndrome (31) disability (19) TPN (18) aspergers (17) Great Ormond Street (15) parenting (12) carers (10) autism (8) Blogging (6) shooting star chase (6) children's hospice (5) family (5) Mitrofanoff (4) BIBs (3) Britmums (3) Neuropathic Bladder (3) SEN (3) cancer (3) communication (3) diagnosis (3) gastroenterology (2) holiday (2) singing hands (2) travel insurance (2) BSL (1) Child Hospice (1) Colectomy (1) antibiotics (1) benefit cuts (1) benefit scrounger (1) bladder (1) david cameron (1) france (1) health (1) hospice (1) line infection (1) makaton (1) portage (1) siblings (1) sign language (1) sign supported english (1) ultrasound (1)