Taking time to stop and smell the roses is important when you have spent so much of the last few years cooped up in hospital. Suddenly during the long, monotonous hours, when you become institutuionalised and stare at the walls for hours on end the little things become so important, like sitting on a sofa, cooking a meal, sleeping in a proper bed - things we take for granted. What becomes even more important is those precious moments of family time, of normality, you crave for normality - like the opportunity to do the school run with your son, to hold his hand, listen to him while he chats to you about his plans and ideas, stop to smell the roses.
That's why there has been a bit of a gap between posts - Daisy has had some health issues and a stay in Great Ormond Street and it reminded us to take time out and enjoy our freedom when we do have it.
We are so lucky that we can manage a huge amount of Daisy's care at home and thanks to a great palliative care plan and a regimen of intravenous antibiotics we have been able to have some stability and family life again. When things do go wrong it's a massive shock to the system. Daisy had a new hickman line placed in June - this is the lifeline through which she receives all her nutrition, her survival depends on this line, without it she would die as she has intestinal failure and cannot digest food. Her line had to be changed as it had been repaired and was colonised with bugs, these were being kept in check by antibiotics but we lived with the risk of sepsis while the line was in place. Then a few weeks later Daisy went back to Great Ormond Street for a stay for what is known as her TPN MOT. This is the annual battery of tests she has to undergo to check how her body is coping with being fed directly into her bloodstream, it was also an opportunity to catch up with her endocrine consultant and her palliative consultant.
It was a physically and emotionally trying time for Daisy - having spent so much of her time in hospital she absolutely did not want to be there and was very unhappy, and the tests themselves were physically draining and, in some cases painful. Although we are waiting to hear some of the details at our next clinic appointment a conversation with Daisy's consultant confirmed once again what we discussed last year, the gastrointestinal team have reached the end of the road in terms of anything more they can try, she has had her colon removed, a stoma formed, she is on TPN, she is on a pain management regimen - her intestinal failure is irreversible and if Daisy was any other child she would be on the transplant list waiting for a call to receive a new stomach and small bowel. But sadly, Daisy is not any other child, Daisy has Costello Syndrome and this means that she has a mutation on an oncogene which in a nutshell increases her risk of developing cancer significantly, and as the anti-rejection drugs that are used post transplant also carry an hugely increased risk of developing cancer it means that a transplant is not an option. So we continue to manage her symptoms and enjoy our lives.
Sadly she does face surgery later this year, her mitrofanoff stoma, formed out of her appendix to create a channel from her bladder to her abdomen for us to catheterise her, has prolapsed and needs to be re-formed. There is also a possibility that while she is undergoing that surgery the remainder of her rectum will be removed as her recent endoscopies showed that , despite the other 99% of her large bowel being removed this remaining 1% is still inflammed and bleeding and will not get better. We are waiting to hear from the gastro team whether they want to restart a regime of steroids and immunosupressants or go ahead with the surgery. If the latter then she will also restart her twice daily growth hormone injections (these were stopped while she was on steroids), this is to give her metabolic stability as she has a problem with dropping blood sugar levels.
So while we know that there is another hospital visit looming we are spending our time as far away from hospitals as possible, managing her care at home, trying to ignore little niggles that would have previously had us running for a clinic appointment. Home time and family time is the most important thing, making up for lost time with all the children, taking time out, smelling roses.....