So, it's New Year's Eve and already the stream of texts and emails are coming through from friends and family over the world, full of good wishes for 2012, hope that things will improve....as you all know, I am always optimisitc, glass half full but also profoundly realistic. Andy and I chatted about our hopes for 2012 earlier today and we both agreed that actually, our philosophy of one day at a time still holds true today, new year's eve, it's just a date, a number, our hope remains for stability, and time...whether it's tomorrow, next week, month or year.....
As it is, Daisy is in hospital. Yesterday she woke up in severe pain and despite the overwhelming cocktail of drugs we have at our disposal at home we could not get ontop of it and more worryingly her breathing was becoming laboured when she did fall asleep. So it was time to visit our local hospital, and such a relief to have some great registrars on duty who made our visit less stressful. Daisy needed intranous morphine and fluid resuscitation and today is tired but better. In fact we have brought her out on home leave in the hope that we can manage her pain at home but will return if it gets worse. Hopefully if she can get through the night without an escalation in her pain management requirements then she can be discharged. It is really worrying how bad her pain became yesterday and how quickly and we just hope that this is not the shape of things to come. We are due to go to Great Ormond Street in a couple of days so maybe they will have an idea why she is continuing to get such bad pain or at least we can tweak her pain management plan to avoid it getting to the point where she needs to be in hospital.
As it is New Year's Eve I have been reflecting on 2011 and what it has thrown at us. It has been the year of surgery and bladder issues for Daisy and facing facts and some pretty tough conversations for us, her parents. Daisy now ends the year with an ileostomy stoma which continues to have high output and episodes where is completely shuts down (goes into pseudo-obstruction), she has a surgically formed jejenostomy through which she receives her medication, her gastrostomy is now permanently on free drainage with a bag attached as her stomach does not empty and her reflux and reverse motility is worsening, she has a mitrofanoff stoma and we are now able to change her catheters daily at home through this, and of course she has her hickman line, a central line which goes into a main vein into her heart through which she receives her nutrition (TPN). She is on permanent antibiotics and anti-fungal medications because of the bugs which are colonised in her body, these treatments keep the bugs dampened down to a level where they do not overwhelm her causing sepsis, but we live with this fear permanently, especially as she becomes resistant to antiobitics as a result of long term usage. And of course there is the cocktail of pain meds she is on - enough to fell an elephant but sometimes only enough to take the edge off the pain for Daisy. From a medical point of view things have deteriorated hugely - her TPN requirements are going up not down and now we are faced with the situation where there is no more surgery or treatment that is going to make things better, just symptom management and our hope for time and stability.
But Daisy's cognitive development is outstanding, she signs constantly and when she is well and confident this is backed up with lots of talking. She is completely in love with her siblings and if you mention any of their names she signs brother or sister and then signs "love". She is also obsessed with telling people if they are boys or girls having worked on this in school which is always amusing when strangers, such as the man who came to read the electricity meters, come to the house and they are greeted with shouts of "boy!" and the associated sign!
I have to keep focussing on the positives - she is still with us, this has been a year when we have said goodbye to others close to our family, she is still fighting, our determination to keep her at home is unwavering. We just cannot dwell on what 2012 will bring, we could not have predicted what 2011 brought our family and I just have to be grateful that we have ended the year as we started it, as a family of six - we have more battlescars, we have increase our medical knowledge, we have come to embrace the rollercoaster of Asperger syndrome, we have ridden the storms, plummetted the depths of our emotions and yet we still seem to be standing. The only thing I ask for next year is time....more time together, time away from hospital, time for me, time to be a couple, time to be a family. But I am aware that we have already been so blessed, with seven years with Daisy, and thinking of this is what reminds me that the cup will always be half full, against all the odds, she has given us seven years of joy and love....I think I will leave it at that and continue to take things one day at a time.....
Thank you to all my wonderful friends who continue to give me such strength and support, so many of you I have never met, some of you have only come into my life since having Daisy, but to know that all over the world there are people who are thinking of us and rooting for us really keeps me going....I feel the love, thank you.
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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