Well we lasted six whole weeks out of hospital, and I guess all good things come to an end as by week six Daisy was spiking temperatures and clearly unwell so back we went to A&E and we revisited the whole rigmarole of fluid boluses, IV antibiotics and juggling.....I had hoped to take the older 3 children to France for half term while Daisy stayed at Chase hospice, another plan shelved for another time....This admission was for another infection, caused by the bacterial overgrowth in her gut, this time however the bugs have become resistant to one of our usual antibiotics, Gentamicin, inevitable really but now limiting our options further. The other problem was that Daisy's stoma was pouring out fluid and so she was becoming more and more dehydrated. Her TPN has been increased even further and she regularly receives extra IV fluids ontop of this to make up for the losses from her ileostomy which are draining too much sodium and potassium from her. Having hated maths at school I frequently find myself having to calculate fluid balances and top up fluids to replace losses..
Our consultant and Great Ormond Street has decided that Daisy needs to come in for another stay - he feels that Daisy's high stoma output is caused by it being in overdrive, like a driver with their foot on the accelerator, conversely the pain and discomfort she feels from her defunctioned colon is because it does not move at all, like the handbrake is on. He wants to assess if the small bowel is permanently in overdrive in which case there may be a drug based solution to help or whether this pattern varies between too fast and too slow, in which case there is not a lot that can be done. We asked if this stay could be put off until the new year , there is too much happening in our lives between now and Christmas and we want to enjoy family time away from hospital. The main event being our trip to Disneyworld, Florida...
As I type I am surrounded by cases, lists and a milllion and one other "essential" things we need to take. We leave later this afternoon to stay at the Gatwick Hilton where we will meet the other families going on the trip and most importantly, the medical team. I have a spreadsheet of TPN connection and disconnection times taking into account time differences and Daisy's increased fluid needs, we have lists and letters coming out of our ears to help us pass through customs. Tomorrow morning we will meet our TPN delivery driver at the terminal and he will hand over all the TPN we need for the holiday, plus extra bags of fluid, ancilliaries and all the medical stuff we will need just in case....needless to say our personal packing has been kept to a minimum (which is fine because we'll have plenty of space on our return journey for all the souvenirs we anticipate bringing back).
When the chance to go on this holiday was first offered to us, my instinct was to think that there were more deserving cases than ours, sicker children...but looking at our lives I forget how much Daisy and her siblings have gone through not just since she has been born (and for the weeks when I was hospitalised before she even arrived) but particularly in the last two years...she has intestinal failure, is TPN dependent, has a high output stoma regularly requiring extra fluids, because of all the issues and risks associated with her costello syndrome (malignancy, heart problems) she is not a candidate for a transplant of small bowel...this is the end of the road as far as any treatment goes, it's all about management of symptoms. And the older children, two long school holidays in a row spent in hospital, every half term in the past two years, holidays, birthdays...so many times we have had to change plans - they really deserve this fantastic chance to have time together as a family having fun...
watch this space for photos!!!!!
(PS - the house will be occupied in our absence by the way!)
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 (33) Great Ormond Street (19) 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)