A friend of mine in a similar situation once described this life as like a game of snakes and ladders - you climb a ladder and make some progress towards your goal then when you least expect it you hit one of those pesky snakes and back you go again.... Over the past few days we have been climbing some big ladders, Daisy was managing 10 hours off TPN, she was enrolled in the hospital school and loving it, Andy and I were enrolled in TPN training school and feeling one step closer to bringing her home, we had even discussed a date of 24th June to discharge Daisy back home for good - I use the past tense as when we least expected it we hit that great big snake you get just before the finish line, the one that sends you all the way to the bottom of the board again....
Daisy started vomiting on Thursday evening and by Friday evening it was clear that her gut had gone on strike again (technically called pseudo obstruction) just as it had when she was first admitted to hospital all those months ago, her temperature also shot up and blood cultures show that once again she has a line infection. The bottom line is that she has had another flare up of her gut inflammation which has caused her to gut to stop working again, this has meant that we have had to stop anything going into her gastrostomy or jejunostomy. She is back on 24 hour IV fluids/TPN plus IV antibiotic infusions and her immunosuppressants have also been switched to IVs. Her consultant came to see her today and confirmed what we already knew, Daisy will be on TPN for the rest of her life. The plan now is to try and manage the inflammation again and then she will have another scope (where a camera looks at her gut to see what is going on), she may have to go onto even stronger immunosuppressants which would definitely only be IV infusions and at this stage we really don't know if getting back onto feeds into her jejenum (top of her intestine) is a possibility. All we can do is hope that in the same way Daisy has suprised us with the sudden turn of events she will suprise us by picking up and getting back to where we were before.
As always we hope to save her hickman line but the infection is pretty bad as it is also around the entry site in her skin as well as in the line. It's just a waiting game to see what the next few weeks bring. Andy and I are continuing our TPN training and all the equipment we need is being delivered to the house so at least we will have everything in place although it is looking likely that the hospital will have to bend their own rules and allow Daisy home with minimum breaks from the TPN.
The rest of the children are really disappointed - I was supposed to have brought Daisy home for the day on Saturday to have a belated birthday party for me (it was my birthday on the 10th) - instead I came home on my own and then spent most of the day catching up on sleep as I had spent the previous night up with Daisy.
I guess I was a bit taken aback when the hospital were talking about a discharge date of the 24th - always in my mind I had imagined that Daisy would get home to coincide with the rest of the children breaking up for the end of term so perhaps if I keep that in mind then I won't be disappointed and we really will get home in time for the summer holidays.....
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)