With the weather warming up many of us will be thinking about holidays! Either you're organised and you already have something booked or you're like me and you're scouring airbnb and travel agents for late deals as you've left it pretty late!
As I start planning our own family holiday I've been thinking back to when we first went away with a tube and how daunting I found it. For that reason I'm putting together a little blog series about tube-feeding on holiday with five tips on different aspects. This post is about what to consider when you're planning your holiday....
Tip #1 - Relax and refresh!
No doubt your life is pretty full-on if you are tube-feeding and dealing with health-related issues. Holidays are supposed to leave you feeling refreshed and ready to crack on with life again so make sure that you choose something that will help you achieve that. Maybe you equate holidays with jetting off to farflung places and you can certainly still do that with a tube, but if you're new to this game and the thought of doing that fills you with terror then that's OK - find something nearby such as a self-catered cottage with a hot tub or an outdoor family resort which will keep the kids happy. And then go away, relax, enjoy and use some of the time to plan the farflung adventure that you're going on next year! We've gravitated back to the same area in Wales for the last few years for that reason - it's easy to plan and we know we'll end the holiday refreshed. After a particularly challenging season we had a holiday from home and went out for full day-trips without any of the packing/unpacking/travelling fiasco and had a great week!
Tip #2 - Check your stock levels well in advance
We all know that ordering medication can be a bit of a headache. Well in advance of going away make sure you check all your medication levels and order the bits that are likely to run out not just while you're away but also just before you go or soon after you get back.
Check your tube-feeding supplies too. When is your next delivery date? Is it when you're away? If so, ring them to rearrange. Order any extra bits you'll need and get hold of extra supplies. Do you need extra dressings to cover the peg site on the beach? If your little one is constantly snapping the removable ends on the PEG then can you get hold of extras for your trip - yes, I'm speaking from a place of personal experience and frustration there!!!
Another thing to check with the nutrition company is whether they will deliver feed supplies to your holiday destination for you. Some feed companies also offer rumble boxes for packing your feed supplies into to keep them safe whilst travelling.
Tip #3 - Don't be daunted by the packing!
The amount of kit you need to tube-feed for a week is incredible! If you're not used to it then packing all that and making sure you don't forget anything can be daunting. I remember going away for a pre-booked holiday 2 weeks after my son got his PEG and feeling very stressed by the packing and unfortunately we've forgotten things on occasion. The worst thing we forgot was the pump charger, whoops!
To help with the packing I've put together a tube-feeding packing list for you to download, print and fill out and hopefully it will help you to not forget anything. You can find it at the end of this post :)
Tip #4 - Give yourself peace of mind by preparing for emergencies.
Unfortunately tubes dislodging, infections, and other health issues can all lead to the need for medical input even when you're away. We've certainly toured our fair share of medical facilities whilst on holiday! For this reason I now research the nearest medical help locations before we go. Feeling prepared makes me feel more relaxed and it's helpful to have these written down in case there's no phone/internet signal when you need to find your nearest medical help in a hurry. I've included a section on the packing list for you to fill out emergency and non-emergency medical help locations just in case you need them (fingers crossed you won't). I also take my son's medical notes or at very least his most up to date clinic letter with us which has proven useful on occasion.
Another really great thing to do before you go is to sign up to Skiggle. Skiggle aims to help people with disabilities through creating a mutual network of users to provide each other with practical help. As a member you can put out a cloud-based SOS for care-based essentials, asking for immediate assistance in unforeseen circumstances from members who live in the local area. This would have been exceptionally useful in our 'we forgot the pump charger' scenario! You can find out more about Skiggle here and on their Facebook page.
Tip #5 - Be ready for some problem solving!
Tube-feeding in our experience has required a lot of problem-solving and this is amplified when you go away on holiday. View your trip as an adventure and don't be put off by the challenges - a memorable challenge for us was working out how to attach a feeding rucksack to a baby back carrier rucksack because our older child wanted the whole family to "climb a mountain" (if you need the answer then it's a carabina bought from a climbing shop which we now take everywhere with us)!
Now that we've been through all the planning practicalities I can move on to what I really want to say to you, which is that I hope you have a fantastic holiday and that you create lots of great memories, and come back home fully refreshed and ready to take on the next set of challenges.
Here's your Tube-Feeding Holiday Packing List to make the planning that little easier.
If you have the time then we would love it if you joined our TubieeGo Chat group to show us where you've been. Sharing your tube-feeding holiday adventures might help other people who are a bit daunted about going on holiday to get away too.