We are going on holiday, a real family holiday. This will be the first holiday in a long time. We have been very fortunate to have two holidays in the last few years but both of these were through two amazing charities Caudwell Children and Torbay Holiday Helpers Network. These were supported holidays with organised trips, support and back up, we didn't have to do too much thinking or planning and there was the constant reassurance that there were people around to help us if things went pear shaped. This holiday is a normal, family, self-catering, travelling by ferry, week in France - eeeeekkkk!
We love France, we love the beach, we need to get away, so a few months ago we started working on how we could manage a family trip across the channel. The first thing was insurance. OK so it's France, it's hardly the other side of the world, and theoretically our European Health Insurance Card would cover any medical treatment Daisy or the rest of the family would need. Yes - theoretically, until you start thinking about scenarios...so, what if we have booked our ferries and are unable to travel because Daisy is unwell, we cannot afford to lose several hundred pounds. What if she has a line infection or septic episode while we are away, well yes she could receive treatment in a French hospital but if she needed a new line then she is tricky to anaesthetise, she has had numerous line insertions and can only really have new lines fitted by the Interventional Radiology Consultant at Great Ormond Street..what if, what if..... When we started going through the scenarios, good travel insurance is essential. While we do as much as possible to minimise the risk, there are so many elements to Daisy's health that are out of our hands.
It's no good going to a standard travel insurance company for a child like Daisy - there is only one child in the world with Costello Syndrome, Instestinal Failure, TPN dependency, Neuropathic Bladder requiring Mitrofanoff stoma and catheter....When she was just dependent on 24 hour continuous feeding via a gastrostomy four years ago we could buy standard travel insurance as funnily enough there are a lot of children in the UK with gastrostomy feeds. Taking advice from friends with complicated children who had travelled before we contacted an insurance broker and they took our situation to a panel of underwriters, it took a few attempts, so many elements of Daisy's condition are not "listed" items, but eventually we were able to get a quote for an annual insurance policy covering the whole family for travel to Europe, and for a rock bottom price of £200 - result!!! For those of you who are looking to travel with complex children, the thing that swung it for us was our ability to manage risk - the fact that Great Ormond Street had signed us off to administer TPN and intravenous medication and manage Daisy's catheters in order to keep her out of hospital. We were so pleased that we were able to get insurance for all of us at such a good rate and it was all thanks to the team at J D Travel.
So once we had sorted out the insurance, the next thing was travel. We normally stay in Normandy in a friend's holiday apartment so accomodation was not a problem. But the choice of route to get there was. The channel tunnel is the obvious choice, but Daisy is not a good traveller and then factor in a boy with aspergers, a stroppy teenage daughter and an energetic 9 year old and you can understand why we would want to minimise time spent in a car, especially bearing in mind that Andy and I spend half our lives in a bleary eyed sleep deprived state so the tunnel was soon excluded from the plans. The shortest drive to the aparment involves the longest crossing - from Portsmouth to Caen, but this is expensive and we also had to take into account departure and arrival times. An overnight crossing, which we have done without Daisy, is not an option with a child on TPN. An early morning crossing would just be too stressful to try and manage. Eventually we found a solution, Newhaven to Dieppe - a reasonable crossing time at four hours, two hours drive from our destination and the best of all a 10.30am departure time.
I booked the ferry and remembered to ask for priority boarding, to have the car parked by a lift and requested an adapted cabin so that we could change Daisy's stoma bag and catheter in comfort. So far, so good.
The next issue that needed to be addressed was the whole "family" holiday bit. We have come to accept over the past few years that attempting to do stuff as a whole family, especially major events like long journeys and travelling, is a recipe for disaster when you have a child with aspergers in the family. Theo needs routine, quiet, predictability. Not racing to get to a ferry, over excited siblings, stressed parents. But we also wanted to spend time with our son in France. So a compromise was reached. We booked the apartment below ours and arranged for Theo to travel out to France separately with my Mother. This means that he can have his own space to escape to, an absolute pre-requesite for him and can avoid the stressy travel bit. And the apartment we have booked has wireless internet so double bonus. At this point can you sense the pound signs racking up on what is supposed to be a cheap family getaway, sadly with additional needs nothing is cheap, even if you do get a bargain with the travel insurance!
So now onto the nuts and bolts of the holiday. Intravenous saline flushes, buccal ketamine and catheter flip flows are not standard stock in Carrefour so again back to the scenario planning, what do we need to take to ensure that supplies don't run out and that Daisy is safe and well while we are away. Now this is where years of experience as a marketing manager come in handy, I love a spread sheet and a project plan. I now have a spreadsheet of all of the essentials Daisy needs and what we need to ensure is in stock. Daisy's TPN fluid, the fluids that keep her alive, is delivered every two weeks so I needed to make sure that we had enough to take with us and enough to return to, bearing in mind it's the easter holidays. I have borrowed a TPN cool box to transport it and factored in a "safety" bag incase one of the bags is unusable.
Then ontop of this there are all the ancilliaries needed to actually set up Daisy's night time drip - alcowipes, giving sets, saline flushes as well as adminster her intravenous drugs; IV syringes, needles, more flushes, more alcowipes. There's the IV pole to mount the TPN pump onto, plus the charger, the meds that go through her jejeostomy, the pain medication (some pretty heavy duty class A drugs requiring doctor's letters), the enteral pump and charger, catheters, bladder syringes, bladder flushes, bionectors, dressings, hibiscrub, IV tray, stoma bags, extension bags, catheter bags, bile bags..........I won't bore you with the list but about the only thing we know we can get from the supermarket is baby wipes!!!!!
I have a huge file of information all about Daisy plus her drugs chart that also needs to come with us, the details of the nearest hospital and a few back up "medically savvy" french speakers...just in case!
So that's half the car taken up with Daisy's medical stuff, plus a ton of clothes and bedding to minimise the time spent doing washing, stuff to entertain her on the journey, then there's the normal stuff the other children need, half a dozen tins of beans and some cheese and onion pasties to ensure Theo has something to eat (remember, he has issues around food), Xanthe's hair straighteners and ten tons of makup and toiletries, Andys wishful thinking piles of novels he thinks he will have time to read (dream on!) and if I can find a tiny corner of the car I will cram in my running stuff so that I can get away from it all for and hour and run by the sea.
Reading this you must wonder why on earth are we bothering, it's a military operation, just to get away, bearing in mind that we will have no night nurses and Daisy will be sleeping in the room with us. We are doing it because, somewhere in the chaos of our lives we will find little moments that will last a long time, picking shells on the beach with Daisy, going for a walk as the sun sets with Theo, visiting Monet's Garden with my mum and Xanthe, choosing fish at the market with Jules, maybe Andy and I can enjoy a sneaky bottle of red wine on the balcony while the rest of the gang are watching a DVD.
Daisy is beyond excited at the thought of going on holiday, she is looking forward to the boat and the cabin. I have learned the makaton sign for beach and we have talked about what we are going to do when we are on holiday. She has decided which toys are coming with her and which are staying behind, inevitably it's Donald Duck who she has decided is too naughty to go on holiday....
We don't expect it to be relaxing, but we expect to give our children some memories of time together as a family . I guess this is the thing we have learned, plan, plan, plan - for every scenario and take pleasure in the little moments.....au revoir!
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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