Andy is doing the night shift at GOS tonight and I really should be doing domestic goddess things like putting the washing away but instead I have snuck into Theo's room while he is asleep with a big glass of wine to check my emails and update my blog on his computer.
So here is the latest:-
Daisy woke up on Monday morning with a 40 degree temperature, not great when you are transferring to GOS for a procedure - anyway we loaded her up with nurofen and calpol and got into the ambulance. Interested to note through the ambulance window that there is another branch of Chariots Roman Spa in Streatham High road, we always look for it as a landmark at Vauxhall Cross on our many trips back and fore to GOS - not sure that conventional spa services are offered given the number of rainbow flags flying from the roof. Anyway, I digress...
We got to Rainforest ward and Daisy went into overdrive which is her usual for a visit to GOS - she lost a canula and then had massive bouts of bloody diarrhea. As with all of my children she does like to draw attention to herself. Daisy losing a canula precipitated something which Ihave never had to do before, have a stand up row with a doctor on a ward. As Daisy has tricky vein access the nurse in charge called the Clinical Response Nurses to come and canulate her, they have been trained to deal with children just like Daisy. So in strolled these two 6 foot, handsome male nurses singing songs from In the Night Garden - both D and I were weak at the knees. Very carefully and considerately they tried to get access to her veins but without success, they wanted to move to plan b, which was to call an anaesthetist. These are the people who can get a line into a vein where there is no vein.... However our dear ward doctor thought he could do better, he swaggered in and without even acknowledging Daisy began to pick up her hands and feet looking for access, Daisy started to scream and the hunky nurses disappeared, outranked by the egotistical doctor. The bottom line was I got assertive (while inwardly quivering) and he then told me that in 19 years in medicine he had never had a failed cannulation - I got the last laugh however, I told him that I did not want a junior doctor canulating my child, turns out he's not a junior, someone somewhere promoted him to registrar, god help us all.................
Joking aside, it's not been easy being back at GOS and persuading the team, most of whom were meeting Daisy for the first time, to make her more of a priority than they currently were. Her test results changed this. After a few delays on the Tuesday Daisy eventually went to theatre for her upper and lower endoscopy. She has had a lot of problems with anaesthetic previously and this had been our biggest concern while taking her to theatre, we just did not think about test results, so many have been inconclusive. Not this one. The consultant who had scoped her was waiting for us in the recovery room to show us the pictures he had taken of Daisy's gastrointestinal tract. Basically from top to bottom she has severe inflammation, ulceration and scarring - the pictures made us wince, her gut is raw...... He took lots of biopsies and blood and currently they are looking at whether this is caused by an increase in her existing gut inflammation, an autoimmune problem where the body attacks itself or the results of a viral infection. The problem is if it is the first two the treatment is to up her dosages of immunosuppressants and steroids, the side effects of which are cancer,something her pre-existing costello syndrome gives her a 17% increased risk of, if it is a virus they need to look at treating it.
These results now meant that Daisy could be prioritised to have a permanent line placed into her veins as there was no way she was going to be able to continue to take nutrition in her stomach. So at 4pm today she went to theatre again to have a portacath placed. This is a permanent line into her jugular vein (or dracula vein as the surgeon so tastefully called it).
All the Gastro consultants and registrars will discuss Daisy's case tomorrow and meet with us midday to discuss plans, we have asked that an oncologist be involved in these conversations given her increased cancer risk and the possible treatment options. We do know that now we have permanent vein access we can start Total Parenteral Nutrition (TPN) which is giving her nutrients through her veins and bypassing the stomach altogether. This will probably happen in the next 24 hours.
Our big hope is that there will be a treatment plan and Daisy will be moved back to our lovely Queen Mary's Hospital for Children for her TPN and treatment.
The evening after Daisy had her scope Andy and I sat in Daisy's cubicle with a big bag of crisps and tried to take it all in. The past four years have been really tough, I was in hospital for 3 weeks before Daisy was born and from the moment she was born we were looking for answers.... time after time tests have come back as inconclusive or within normal limits. Now we have a clear idea of what we are dealing with and the stakes have suddenly gone up.....
I came home tonight to be with the other children - they are so upset that Daisy is still in hospital but Andy and I have always tried to be completely honest with them. Realistically we will not be home from hospital for a long time, the bonus would be to get her closer to home, she may be in for her birthday and christmas.... I tried to get this across to the children and they were particularly amused by my descriptions of Daisy growling at anyone who came near her tonight. She is a fighter, our Daisy Rose..............
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) TPN (18) aspergers (18) cancer (18) Great Ormond Street (17) carers (16) parenting (13) autism (9) shooting star chase (9) children's hospice (8) Blogging (6) family (6) SEN (5) hospice (5) Mitrofanoff (4) BIBs (3) Britmums (3) Neuropathic Bladder (3) communication (3) diagnosis (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)