Last year we learnt that winter can be an interesting time when you have additional medical needs to contend with. Our winter period started in November and continued until April and consisted of chest infections, tummy bugs, PEG site infections and various hospital admissions. It was a bit of a non-stop rollercoaster.
This year we're approaching 'winter' with a touch of trepidation! However, we're fattening up our little dude (literally) and I have experience and plans in place which will hopefully see us through. Here are some of the things that we're doing, which I thought I would share in case they were helpful for anyone else feeling nervous about the months ahead.
1. If you are a carer then GET A FLU JAB!
Last February I became very ill with Scarlet Fever and it taught us just how quickly family life can plunge into crisis when the main carer is incapacitated. My husband was in a relatively new job and it was hard for him to stay off work and I was so ill that getting out of bed was impossible. Add to that the fact that no-one else was trained to tube feed our son and we were pretty stuck.
If you are the main carer then LOOK AFTER YOURSELF! I've put this as the first point because it's really the most important and yet you will prioritise yourself last. There's nothing I could have done to prevent getting Scarlet Fever but I will definitely be getting a flu jab this winter. It is free for anyone receiving carers allowance but is also available for free to carers at the discretion of the practice/chemist so ask for it even if you don't receive carers allowance.
2. Build your village
Have you ever heard the saying 'It takes a village to raise a child'? This is so true, even more so when you are caring for someone with complex needs. Last year we were unprepared...we had very supportive friends but we hadn't thought about what help we may need in a crisis. People were willing to help but they didn't know how and in the crisis we didn't have the capacity to teach them.
This year will hopefully be different. We have an arrangement with a local preschool and after school club who have agreed to have our two girls if we need it so unplanned hospital admissions etc won't mean childcare headaches. And we are building up the number of people who our son will happily stay with and training them how to give him his feeds.
In your situation building a village may mean talking to a few close friends and family members about what you may need in a winter crisis and training them to do it. Or it may mean considering respite care options or even charity support if it's available in your area. Whatever it is, identify it and put a plan into place.
3. Don't be scared to ask people to steer clear
Every stomach bug my son has had has led to a hospital admission and huge weight loss with protracted feed intolerance. And I know that this is very mild compared to the very serious risks that common illnesses can lead to in some people.
If common illnesses are dangerous to your child then speak up and make sure that people know that. Ask them to avoid socialising with you if they or their child is unwell. Ask nurseries and schools to be vigilant about infection rules...24 hours clear post temp and 48 hours clear post vomiting and diarrhoea.
Most people are very understanding and simply haven't thought about the implications to other people and their own responsibility in protecting the vulnerable people around them.
4. Have a care plan in place
Our son had been tube fed for six months before winter hit. I knew how to do his feeds and we were ticking along nicely! However, I did NOT know what to do when he was ill and wasn't tolerating his feed. It turns out that neither did the GP and walk-in services and A&E also didn't have the management advice that we needed.
Eventually, after 10 days of feed intolerance and presenting repeatedly to healthcare services he ended up admitted and we now have a clear plan for if it happens again. I know that I need to stop his feed if he starts vomiting and after an hour restart at half rate. I also know that if that doesn't work that I need to give dioralyte at half rate. If that doesn't work I ring the community nurse. And I have a letter to present at A&E which states that he is to be admitted if he is tolerating less than 70% of his feed requirements.
Our plan is very simple and for some of you the plans will be complex and scary. The details will be different for everyone but make sure that you talk to the necessary people and have a plan in place so that you know what to do and how to access help quickly should you need it.
5. Get stocked up!
Why do people never get ill when the shops are open!? Having what you need in the cupboards is so simple but I frequently kicked myself over it last winter as I got everyone bundled up (including the vomiting poorly child) to go to the shops to buy emergency supplies. Now we always have calpol, nurofen and unflavoured dioralyte lined up in the cupboard, alongside a good quality Braun digital ear thermometer which has been worth every penny! Hopefully we won't need them this year although I suspect that that is wishful thinking.
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And that's our plan! I'm hoping that we won't need to put any of it into place but after last winter it's reassuring to know that we're prepared if crisis hits. Is there anything that I've missed? We can all learn so much from each others experiences so please comment below or come and join the conversation on our social media channels.