It feels like forever since I have blogged, mainly because the rollercoaster ride of life with Daisy was going a bit too fast to take time out and write it all down. I am now the proud owner of a shiny new laptop with wireless access however thanks to a lovely gift from my mum and Andy (combined Christmas & birthday!) so I can try and write things down as they happen.
Daisy's gut problems are extreme, in some areas the inflammation and damage it has caused is aggressive. Unfortunately it is not caused by a virus as we had hoped as this would have meant it could be cured but is autoimmune in origin. Basically her body's immune response overreacts and causes it to attack itself. The treatment for this acute phase is massive doses of steroids and immunosuppressants, weaning down to maintenance doses to try and keep the immune system in check. She is now on 24 hour TPN and the hope is that at some point we can try and reintroduce enteral feeds through her gastrostomy but at this point we don't know if she will ever be off the TPN. Her consultant was very suprised at how severe Daisy's inflammatory bowel disease is, particularly as it is rare to see it in a child so young. I bumped into the lovely Prof Hennekam, her geneticist, while on Rainforest ward, and he was very taken aback, there are no reported cases of children with Costello Syndrome developing this condition and as far as we know the only CS children who have required TPN were undergoing chemotherapy at the time.
We ended up staying at GOS for 2 weeks - possibly the worst 2 weeks of our time with Daisy and not just for clinical reasons. Sadly it really felt to Andy and I that Daisy's clinical needs were being superceded by the need to free up a bed space, they were happy to let our local hospital worry about any side effects with treatment and setting up TPN. As it was we stood our ground, supported by our wonderful team at the local hospital who refused to accept her back until treatment had been started, this turned out to be very fortunate as Daisy threw yet another of her spanners into the works.......
After a couple of days of TPN running through the port Daisy developed some strange heart rhythms, the cardiologist came to see her and arranged for her to have a 24 hour ecg done (she has these done regularly to check that her mild cardiomyopathy has not progressed). Five days after having her port placed someone had the bright idea to do a chest xray to check it was correctly placed. Well, turns out it was not correctly placed, the line was too far down and interfering with her heart function, needless to say she was back on the emergency list for a port revision asap! We felt very vindicated in standing our ground not to have Daisy transferrred prior to starting treatment, particularly given the risks of an incorrectly placed port!
Determined to keep us all on our toes, Daisy then decided to have another UTI, this time e.coli - thanks Daisy! So back onto iv antibiotics.....
There was so much more going on during Daisy's stay on Rainforest and I don't want to give too many details in this blog - Andy and I are in the middle of a letter giving feedback to the Matron of the ward. Great Ormond Street is a fantastic hospital and we are so lucky that Daisy is able to be treated there, many of the people we met were wonderful and with Daisy's anaesthetic risks we would not entrust her to any other hospital. Sadly, however, some areas of her care were so poor, samples going missing, drugs being prescribed without informing us, poor communication between doctors to the point that I was being asked what the plan was for some of her meds, we frequently found that it would take at least half a dozen times of asking for things to be done, such as removing an old canula that no longer worked, meds being administered late....I could go on. I think the worst thing for us above anything else however was that bed management seems to be the key driver over and above the clinical care and needs of the child and family. On the main ward board children were listed by their hospital number (easy to tie up number to patient a their names were written on the door of the cubicle) and next to it an estimated date of departure, it this date was exceeded it was circled in red! We felt that inspite of Daisy's problems and the fact that we had actually been given some really bad news, news that essentially worsened Daisy's prognosis, we were just overstaying our welcome. Seems that with all the pressure on beds some basic humanity was missing. We know from our experience in GOS that this is not the case in all wards, unfortunately senior staff on this ward had clearly made this their priority.
Anyway, enough of the rant, our lovely team back at Queen Mary's did everything possible to get her back and she was eventually transferred back on Sunday morning. It is such a relief to be back "home" everyone has been popping in to say hello to her. We are so much happier she is here, the doctors are in regular phone contact with GOS in terms of her management but we are so fortunate that the nursing team here are so experienced and capable and can manage her TPN needs, I heard from other families in GOS that the main reason they were far from home was that their local hospital could not manage TPN. The reality now is that Daisy will be here for a long, long time. We don't know if the treatment is working, GOS want to give it a good 6 weeks, and we have no idea if she will get off TPN completely. I'm hoping that we may eventually be in a situation where she has TPN overnight and maintenance fluids through her gastrostomy in the day to keep her blood sugars up. With so many other issues going on Daisy's endocrinologist has taken her off Growth Hormone Therapy for the time being, the main reason she was on it was to regulate her blood sugars which are liable to dip low if she is not being fed continuously. We spent a year persuading the exceptional circumstances panel at our primary care trust to fund the therapy, so I really hope she can resume it at some time (although I don't miss giving her the injections).
As Daisy is clearly going to be in long term I can't stay with her every night, but at least we are only 10 minutes drive away. I think I will give her a couple more nights to settle in back here - the pain management team are also going to come out at some point to try and find a better solution to managing the discomfort she experiences at night time when her bowel goes into spasm, if we can get that under control I will be happy leaving her overnight, especially as the staff here know her so well and are very experienced in settling her.
Theo told me yesterday that his only wish for Christmas was to get Daisy home, sadly this is not going to happen, however we were able to tell the children that our hospice, Chase, has arranged for us all to stay there at Christmas - they were over the moon, for them that is even better than Daisy coming home for Christmas. Daisy's birthday is 3 days before Christmas and again with the help of the nurses at Chase we hope to get her out for a few hours. We are so grateful for the support of two fantastic charities; Chase Hospice care for Children and The Rainbow Trust. Both support families with life limited children and get little or no government funding, yet without them Andy and I would not get time out from sitting with Daisy in hospital, I have had a couple of opportunities to take some time out when a carer from one of these charities have come to sit with Daisy, this gave me to do some normal stuff and regroup ready for the next challenge. My best day had to be meeting up with a couple of my friends for lunch in Wimbledon village followed by a free makeover at Space.NK - that was better than a full nights sleep, I caught up on gossip, ate something healthy that was not microwaved and had makeup applied that got rid of the dark circles under my eyes........priceless!
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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