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Grieving the loss of normality

Grieving the loss of normality

As parents all we ever want is for our children to be safe, healthy and happy.

That doesn’t change just because our child has SN, just that we need to adapt and change how we do things to achieve this.

On Wednesday Sam had a second swallowing study, his first was when he was a tiny little boy of 12 months old.

We’d really hoped that this study would show improvement in his swallowing, so we could consider stopping adding thickener to his drinks.

The poor little lad struggles to suck his drinks out of his bottle with the thickener in, but as he has such poor motor control he can’t hold a cup to drink from.

The results were shocking for everyone - he was aspirating at all consistencies of fluid. This was far, far worse than any of us imagined and the shock hit hard.

We didn’t have time to deal with the emotions however as Sam was admitting to hospital immediately.

J and I went onto autopilot mode and did what we’ve done countless times before when seizures have threatened to take our boy from us - one of us packed up his meds, the other threw clothes into a bag and together we headed off to hospital with our precious boy.

At this point Sam had only had one meal all day and was tired, hungry and lethargic. His blood sugars were low, causing an increase in seizures, and he was obviously picking up on our fears.

While we’d been getting to the ward, Sams wonderful neurologist had contacted the gastro and dietetics teams to get their input and let them know he was being admitted.

We were seen quickly on the ward; Sam is well known at our local hospital childrens ward, and many of the nurses have known him since he was tiny so the initial couple of hours after admission were actually not too bad!

Lots of people popped in to say hi and to see how grown up our boy had grown, but the urgency of the situation wasn’t lost on us.

The Dr on the ward that evening had spoken to Sams neuro, and knew what the plan was; she gently sat us down and explained that as Sam's life was in danger if oral feeding was continued he was going onto nil by mouth with immediate effect.

An ng tube was to be put in place which would allow him to have some fluids at least until the dietitian came to discuss feed with us in the morning.

Sam has dairy issues, so drinks coconut milk... while this is easily digested it is also very low in fat and calories, so our poor little man was only able to have this until a suitable formula feed was agreed upon.

After a rough night (wards are not quiet places at night, with poorly children crying and coughing, monitors beeping and nurses having to regular come in to check on the children... plus Sam was fitting a lot), we met with the gastro consultant the next day.

She also knows Sam from his early days and is fantastic - she explained that the severity of Sam's aspiration meant that fluids were easily going into his lungs so we now had no alternative for long term feeding other than to have a PEG put in under general anaesthetic.

After three days on the ward we’ve been allowed home with a long-term ng tube for now.

He’s on the waiting list for an urgent PEG surgery but due to his severe epilepsy the gastro surgeon wants a full team in place with anaethetists who have experience with paediatric epilepsy syndromes.

The shock has left us totally broken, every time I see the tube stuck to his beautiful little face I want to cry.

I feel exhausted, sick and my legs don’t want to hold me up particularly well. But we’ll deal with it.

We *will* use this ugly tube to feed our little boy because we have no choice. He needs to be fed and he needs to be fed safely.

Once he has a PEG put in I’m sure we’ll feel better about things - after all, we’ll be more used to managing pump feeds and he won’t have the teddy bear tegaderm plaster on his face to remind us.

In the long run, this is a GOOD thing to happen because it means he’ll be safe, will finally be able to gain weight and will hopefully gain better health. But in the meantime, it breaks my heart.

We are ensuring our boy can be fed safely, be happy and healthy, but the loss of normality in this most basic human need is a painful one.

Firefly Blog

Real life stories, issues and experiences of day to day life by special needs parents and
healthcare professionals.

Carolyn Voisey

Meet Our Blogger

Mum to one incredible little dude, I work full time in higher education and have my own small business as a jewellery designer/creator. I love nothing more than having time with my family, being outside and with my animals (chickens, cats, dog..!). While I love my work it's not an easy juggling act, and on occasion things can go wrong in truly spectacular and often funny ways...

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