After much soul searching and wishing we could see into the future, Andy and I decided that it was inevitable that the ileostomy is going to happen but the thing we have control over is when. Our wish, after five years spent in and out of hospital and Daisy's deterioration in the past two years, is that we just have some time together as a family. So we have contacted the surgeon and asked for the ileostomy surgery to be scheduled for early autumn as opposed to early summer which was the orginal timescale. At least this way we can manage the risk of Daisy spending all summer in hospital and at least (hopefully ) keep hospital stays a bit shorter.
I was very excited to get a phonecall from the orthopaedics team offering us a cancelled date for Daisy's foot surgery. However like a London bus, you wait and wait and suddenly they all come at once - the date offered was the same as the week of tests and procedures planned by the gastro and endocrine teams. However I am so impressed by the fantastic Great Ormond Street Clinical Nurse specialists who have been pulling together and liaising so that hopefully Daisy can have her foot surgery (and some new grommets inserted into her ear canals). On Monday morning I will drive up to Great Ormond Street for 7.30am and Daisy will have her surgery that day, after a night on the orthopaedic ward she will transfer to the gastro ward then have all her TPN and gastro investigations including another general anaesthetic on Thursday when she will have an upper an lower endoscopy. The ward closes on Friday (can you believe this, GOS has some wards which are only open on weekdays even though they take the sickest of the sick) so I am assuming they will not be able to transfer her over to Rainforest ward and have prewarned our local hospital to expect a possible (or probable) transfer - two anaesthetics, orthopaedic surgery and whatever they find when doing their procedures and investigations....I just don't want to take too many risks. We have also booked Daisy into Chase for a respite stay starting on Sunday evening...
I really hope Daisy gets to go to Chase after her hospital stay, for a start managing a child with both legs in plaster who has wasted muscles and vestibular (balance) problems is enough in itself but add into that the pumps and TPN and then the fact that still not a night goes by without the need for pain relief and you can understand why sometimes we need a break....even though going to Chase is sometimes not a break as I wait for the call in the middle of the night that has so often come to say she has spiked a temperature signalling yet another infection.
Jules is now exactly the same age that Theo was when Daisy was born, I look at him and wonder, how did we manage? She was born prematurely and by caesarean (my first c-section out of four deliveries) 3 days before Christmas - the other children were 7, 5 and 2 and I had already spent 3 weeks in hospital beforehand. We were apart for Christmas that year, Andy was at home with the children, I was in hospital recovering and Daisy was in intensive care. Yes things have improved - over the past month we have lost a member of our Costello Syndrome family suddenly and unexpectedly and five children who are also supported by the Postpals Charity have lost their battles, at least Daisy is still with us and fighting. But - much as we were relieved to have been given a diagnosis for Daisy so early on, what has this really meant? No other child with Costello Syndrome has the extreme intestinal problems Daisy has, no-one else manages TPN at home - one or two have been on TPN in hospital when their child was being treated for Cancer or was very ill but normally with this syndrome children are starting to lose their dependency on tubes and starting to eat orally by this age, or at least to be able to take feed into their tummys....Daisy is completely TPN dependent, she still only gets the equivalent of 3 teaspoons an hour of feed into her jejenum for 10 hours a day. We cannot use her stomach as it does not empty properly and the milk would just build up and build up until she was sick. Every single night she screams with pain, I will not be suprised to be told that her gut is inflammed again next week when she is scoped, I don't know of another child with Costello Syndrome who battles with inflammatory bowel disease and has to receive immunosuppressant therapy. And then the children I know with these sort of gut issues don't have the Costello issues - they are cognitively able, they do not have severe visual impairments, they do not have to be screened every few months to check for malignancies, their parents do not have to worry that tight heel cords mean that their spinal cord has tethered or a chiaria malformation has formed necessitating brain surgery.....Some days it is very lonely in this world and I cannot help but feel sorry for myself, every single day we disconnect TPN, we flush her line, we lock the line with drugs aimed at preventing infection, we deliver her meds into her jejenum - no nasty tasting meds into the mouth for Daisy, we make up the milk mixing in complex carboydrate powder to make sure her blood sugar does not drop, set up her enteral pump, we remember to get the new bag of TPN out of the fridge to come to room temperature, prepare her IV trolley, connect her up to the TPN, give her more meds, inject her with growth hormone to make sure her blood sugars remain stable, untangle her from her TPN lines when she thrashes around at night.......day in, day out. And each day we are rewarded by her progress, little steps, more and more words, a new obsession with Thomas the Tank Engine, a cuddle for her brother when he was feeling ill, asking to have her toe nails painted.....and this is why we are doing it, Daisy is not a syndrome or a patient or a set of symptoms, she's just another of our children, maybe a bit more complex and time consuming, but a five year old girl who keeps defying the odds and suprising us with her abilities. I have never compared her with other "typical" children of her age and I must remind myself that while she has a diagnosis, that only serves to get her the help she needs, that label still does not lay out the path of what she will or will not do, having Daisy in our lives is rewarding and wonderful and she is one of four unique, sometimes exasperating, children and that is what matters most.
Roll on Monday...........
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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