Gosh, it has been so long since I have posted, and as always as a family we have adapted and changed to accomodate Daisy's ever changing needs. As I sit here now, Daisy is on a lot more TPN than previously, with her infusions running from 5pm, not long after she is dropped home by the school bus, through to 8am when she is disconnected in time to go onto the bus. She continues to pour around a litre of fluid out of her ileostomy over a 24 hour period and we continue to connect a catheter bag to her ileostomy bag overnight to prevent the output breaking down her skin. We continue to battle with haemoglobin levels and seem to constantly teeter between needing a transfusion and her hb bouncing back up again....life has become even more complicated but after a few weeks at home now we find ourselves adapting to our new routine like it has always been like this!!
Daisy came out of hospital at the begining of September, around 2 months after she was first admitted for surgery - as always her stay was not without complications including a dose of parainfluenza! She also developed a rare side effect of ileostomy surgery, diversion colitis, where the remaining segment of colon which has been defunctioned became inflammed causing her to bleed from her bottom. The treatment for this was twice daily Short Chain Fatty Acid enemas, which were both difficult and distressing to give. The enemas were stopped but unfortunately since coming home Daisy has had a recurrence of this and we are awaiting an outpatients appointment at GOS. It is possible that Daisy may face further surgery next year to remove her colon as it is still causing her a lot of pain and distress and we are now having to give her maximum doses of gabapentin as well as oral ketamine at night to help manage this.
Our saving grace has been the palliative care team, both at GOS and at our hospice Chase - they can't cure Daisy, she is incurable, but they can manage her symptoms and her pain so that the time she has with us is comfortable. We are so lucky to live where we do, there are very few paediatric palliative care teams in the country and we have access to the best. Our joint mission is to maximise Daisy's quality of life and alleviate her pain. Sadly, the pain which we hoped the ileostomy would alleviate is still very much there but with the help of our team we have access to the best expertise possible to make it better.
Daisy started back at school as soon as term started, as always this is the most important thing in her life, so it was important to get her back as soon as possible. Her new one to one support assistant started and has instantly fallen in love with her - who wouldn't! It was nice for me to discover that she knows many of the mums in our area too. Daisy is now in year 1 and is in a group following a very specialist curriculum being pioneered in the school to maximise potential in children with multi-sensory disabilities. She is already more and more vocal and proves to us day in day out how cognitively able she is.
At the beginning of September was a UK meeting for Costello Syndrome run by the UK branch of the charity which supports children with this syndrom. Our good friends, the Deckman Family, who have a teenage son Collin with CS came over for the conference and it was great to catch up with them for a day at our house. Our children have met Collin before so it was a great reunion for them all playing together. We attended one day of the conference with Daisy and met up with other families we had only met online and well as our friends the Stickley and their children including their daughter Rebecca who is 6 months older than Daisy. We spoke with some of the geneticists and researchers who attended the conference and shared Daisy's biopsy results and they confirmed what we had always suspected - Daisy is completely and utterly unique. The problems in her gut have not been seen before in our group of children, they do not know why she has these problems and why she has so much pain. We know believe that without Costello Syndrome it seems likely that Daisy would have had intestinal failure - she has been hit with a double whammy and it serves to make us all the more isolated as we do not belong fully in either world. Daisy shares a gene mutation with the other children with Costello Syndrome but no one else has TPN and ileostomies to contend with. These things Daisy shares with other Gastro families we know, but none of them deal with the other Costello things like the cancer risk, heart problems, growth hormone deficiency, visual impairment and orthopaedic issues like we do.
A week into the new term, Daisy had a respite stay at our wonderful hospice, Chase, in Guildford. As her needs have changed so much I stayed with her for the first 24 hours and Andy also spent a night there, we did have a couple of nights when we were home alone. This really allowed us all to rest and recharge our batteries knowing that Daisy was completely and utterly happy in Chase. She is going back in again for the October half term and we are planning to take the other three children to France, where they are going to practise their french!
Since being back home from hospital I have continued on my mission to declutter the house and get to grips with the paperwork. Many people just do not realise how much paperwork comes with the territory when you have a disabled and medically fragile child - forms for this, applications for that, appointments, letters, info - all of it has to be kept, filled in, dealt with, it's a full time job the cupboard where I have been cramming the paperwork is now officially full so I really have to deal with it! Ontop of that we now have four children in four different schools in four London boroughs all generating their own masses of letters, emails and texts - it's really overwhelming.
My life is a full time managment job, I definitely did not work as hard as this when I was working full time, even though I had three children at the time. Hence the long time taken to update this blog - every day is full on and Daisy's latest problems mean that an already full workload is now even fuller - I am counting the days till the next respite break at Chase just so someone else can take over for a while and Andy and I can get a break. Roll on October!
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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