Sara, parent carer and mum to Daniel, takes us through an average 24 hours caring for her son.
Hello, my name is Sara and I’m mom to a gorgeous little boy named Daniel. Daniel has a number of diagnosis’s Panhypopituitarism, Hydrocephalus, Epilepsy, Diabetes insipidus, Blind, and hypothalamic dysfunction. Daniel does require 24-hour care.
This is a breakdown of an average day in my life, so I shall begin where each new day starts for me, hello 12.01am.
12.01am: Daniel needs his midnight medicines; I need to change his pad and record his numbers. Daniel has a condition called diabetes insipidus and requires a 24-hour fluid balance, we have to measure the fluid that goes in and all that comes out and believe me when I say all. I now set up Daniel’s overnight feed and hope he settles back down to sleep. I can guarantee I am now desperate for my bed, yet in reality this is the beginning of a new day.
2am alarm call, this is just for a quick check to make sure Daniel hasn’t passed too much urine and his medication is holding, all being well I can get back to sleep. Daniel permitting of course.
4am, another quick pad check and hopefully back to sleep for a couple more hours.
6am: Morning, I disconnect Daniel from his feeding pump and change his pad, I work out his fluid balance and hopefully he has passed enough urine so I can give him 8 out of 8 of his morning meds. If he hasn’t passed enough, I give him the 7 medications and wait to check again. His fluid balance is literally as the name states a balance. I sometimes feel my life is controlled by the ins and outs of Daniel’s kidneys. The reality is that if I got this wrong, it could cause serious damage and worse, so I have to be on the ball all the time. If I am honest this weighs heavily some days.
Medications at 7am and 8am and of course the normal let’s get up, wash, change and get ready for the day. Daniel is very much like a new-born in his strength and mobility, so this requires a lot of lifting and Daniel isn’t tiny anymore as he is 6.
Daniel isn’t in school at the moment and so I now start his home-schooling, he is loving shapes, textures at the moment and we are using a lot of craft activities to learn.
10am. Morning feed, another medication and pad change.
We then have some downtime whilst Daniel’s feed settles, I use the term downtime loosely as I often have medications to order, phone calls to make and of course the normal household chores.
Around 10.30am we do Daniel’s Snowdrop plan, this is a neuroplasticity course that we are following, and the exercises need to be done at least 3-4 times a day.
12pm – Daniel’s next lot of medications and feed and of course the 2 hourly pad change to check on his fluid levels.
After this feed we give Daniel some time to settle his milk and I grab a cup of tea and some lunch then it’s time for physiotherapy. We do a lot of this to music and Daniel seems to really enjoy it, my back not so much. I think we need to consider getting a physio bench but it’s another thing on our lottery win wish list.
Snowdrop plan 2nd time.
2pm Daniel’s next feed and pad change and fluid balance check. He also has two more medications now.
We tend to either go for a walk now weather permitting or if I am honest, we sometimes just watch some Yorkshire Vet on TV. If I have the energy I do like to bake, and Daniel likes to help so that is fun.
Snowdrop plan 3rd time.
4pm, Feed, pad change and medication.
Snowdrop plan 4th time.
6pm: Feed, pad change Daniel now has his evening medications 7 in total and his growth hormone injection. I was told that I would get used to injecting my child, 6 months on I’m still waiting.
This is slow down time, shower time, PJ’S and story time and of course cuddle time in an ideal world this would be bedtime, but Daniels anxiety is so high since the covid lockdown that he tends to need to fall asleep in my arms.
8pm, this is Daniel’s last feed of the day, he has to be fed little and often as he cannot handle the volume it also it helps to regulate his levels. Another pad change and fluid balance check and hopefully his medication, all depending on numbers.
Hopefully I have now managed to get Daniel into bed, and I get time to relax a little, catch up on some tv and maybe social media etc.
10pm, another pad change and water bolus for Daniel. I sometimes try and get a couple of hours sleep here but to be honest I stress that I would miss the 12am alarm so sometimes, I just grab a shower and read.
This is where our day officially ends but so often the days blend into each other. When I say it’s a 24-hour care plan I meant it.
I’m not going to lie and say It’s not tiring it is and yes at times I do literally cry with exhaustion, but as any SEND parent will tell you, if our child needs this level of care then they get it.
Daniel is worth it all.
The Disabled Children’s Partnership is campaigning for better provision of respite care and short breaks for families with disabled children. Read more, and join our campaign here.