Today is my lovely husband's birthday - however I am here in hospital with Daisy and he is at home watching the footy. We have friends staying over on Saturday night to look after the children so hopefully we can actually get some time together this weekend, even if it is in Daisy's hospital room.
Yesterday was another busy day. The hospice had arranged for a group of mums to have a trip on the London Eye followed by lunch at the Harvey Nicks restaurant in the Oxo Tower. I had the night from hell with Daisy the night before, so was feeling very tired in the morning and not in the mood to put my glad rags on. I was also trying to catch up with Daisy's doctors to discuss plans and next steps before running for the tube to get to Waterloo in time. I did at one point find myself in the surreal situation of standing in the ward equipment room surrounded by IV poles and cardiac monitors trying to tame my wild hair into something slightly more presentable while the ward housekeeper stood guard outside!
It's always good to catch up with other mums of special children, it's the best way to swap tips and get advice. It was so strange being out in the real world however and I was torn with wanting to be back with Daisy, who was quite happy in the care of one of the chase nurses.
I stayed in the centre of London after our Oxo Tower lunch as Andy and I had been invited to Fortnum and Masons to tell Daisy's story to a group of invited guests at an event for the Association of Children's Hospices. I had written out Daisy's story and Andy had put together a slideshow of pics of Daisy and the children, I nearly lost it at one point however when I talked about the fact that Daisy is life limited and looked up to see grown men in front of me in tears. The event went very well and the Association of Children's Hospices hoped to have a few more corporate sponsors as a result.
We travelled home on the Northern Line and Andy dropped me off at the hospital while he went home to sort out the rest of the children. Once again Daisy had a very unsettled night despite regular pain relief. We are going to try some antispasmodic drugs tonight and see if they help. I think the bottom line is we are not convinced that her gut is healing as quickly as hoped. Our consultant here is going to write the the Consultants at GOS asking again for them to do a full thickness biopsy of her gut. This is the only way we will know if there is hope of it getting completely better or whether it's best to just persevere with the TPN and a tiny bit of enteral (via the tummy) feeding.
We did start the enteral feeding today - although you can hardly call it feeding - she is receiving 1ml an hour of her normal prescription milk but less concentrated, over a 20 hour period. ie: 20mls a day of milk or five teaspoons!!!!! We are going really slowly with the feeding, the doctors here know Daisy so well and they know that if we push her too quickly then she will suffer a setback. No one is completely convinced that she will ever be back to her regular regimen of 70mls/hour of concentrated feed. At the moment the best Andy and I are hoping for is a combination of TPN supplemented with some enteral feeds, this would be enough to get us home at some point.
We started the conversations today with the staff here about logistical arrangements for Christmas and our two night break at the hospice and all that will entail in terms of equipment, emergency supplies, drugs, TPN, transport etc. At the same time I thought it would be useful to get the community nursing team thinking about Daisy's needs for going home, although this is a long way off, as there is a lot involved in terms of supporting a TPN dependent child at home and Daisy will be the only child in area on home TPN. We thought we would do our bit and get her room redecorated and ready for when she does come home - I'm thinking an "In the Night Garden " theme although she might be so excited at pictures of Upsy Daisy and Iggle Piggle on the wall she might never sleep...............
I'm staying late at the hospital tonight then going home as Andy has to leave early to get to the Reading office so will not be able to drop the children off. Xanthe came home from school with a sore throat and croupy cough so I am already anticipating that tomorrow will be a bit of a nightmare . She probably will not be able to go to school and she can't sit in Daisy's cubicle because of the infection risk, she can't go to anyone elses house if she is feeling poorly so I'm going to have to juggle big time tomorrow. I have a nurse sitting with Daisy from 3 till 7 tomorrow evening so at least that time is covered - roll on the weekend!
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!)
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