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The juggling act

The juggling act

Have you ever watched a juggling act?

I remember seeing one on TV and thinking how incredibly talented the juggler was while also wondering how on earth did everything not come toppling down?!

That’s how I feel about our life at the minute.

Our beautiful boy is now six and if you’ve read any of my previous blogs, you’ll probably be fed up seeing the words “spina bifida, hydrocephalus, sensory difficulties and epilepsy”.

Those are just words on a page, but to us, they are the biggest things we have to juggle.

Jacob has battled some true demons this year, which hurts my heart so much.

If I could take it all for him of course I would, without a moment’s pause.

That’s a parent’s love though isn’t it?

In 2020 alone, Jacob has been admitted to hospital eleven times (not including the multiple seizures in between).

Eleven times we’ve had to watch our child become unresponsive due to seizures, call an ambulance, bring him through A+E and be admitted into his usual neurological ward in the regional children’s hospital.

I think there’s sometimes a perception that this becomes “routine” or “the norm” for us but truthfully, it doesn’t.

Each time it happens, I have the heart wrenching fear that we are going to lose him.

Is that being melodramatic? I don’t think so.

Jacob’s hydrocephalus is controlled by a ventriculoperitoneal (VP) shunt that drains the excess CSF from his ventricles.

This is a life saving device and if it malfunctions, it can be fatal.

Unfortunately, each time he has had a shunt malfunction he has presented in totally atypical ways.

There’s no pattern to follow, none of the usual signs or symptoms and nothing to reassure us that he’s OK.

He has had three emergency neurosurgeries within the past three months. 

The presentation on these occasions has been an increase of epileptic seizure activity.

That we could handle, it was a pattern! If he has more seizures, push to get the shunt checked. Easy right? WRONG.

The only real way to check the shunt is working well is to do a CT scan.

Children are meant to have a maximum of five scans in their lifetime to reduce the risk of brain cancer due to the exposure to radiation.

We’ve genuinely lost count of how many Jacob has had now (he’s on his eight shunt) so the two main teams who look after his shunt and epilepsy are growing increasingly worried about the risks.

How do you balance that?

Thankfully, it isn’t our decision (although is very much our worry). We bring him to hospital and tell the “story” of what’s happening and then it is up to the neurosurgeons to decide if the symptoms warrant the risk of a CT versus the risk of missing a shunt malfunction.

Sometimes it’s a case of “wait and see” in hospital which can be both frustrating and terrifying.

Our most recent admission has been the most confusing yet.

Jacob seems to be very triggered by school and will often have seizure activity there.

His EEG has confirmed he has epilepsy so we have to treat this as if he is in trouble and manage it safely.

Despite that...his behaviour worries me a lot.

As a trained learning disability nurse I have felt for a while now that Jacob shows some traits of autism (which isn’t to say he actually has autism).

For example, he is very reluctant to touch certain textures, he has a very restricted list of foods he will eat, he claps and shakes his head, he will seek out firm touch and will often not understand play if it isn’t directed by him.

Sadly, he also hits out if he becomes angry and will become incredibly emotional if he doesn’t understand what’s happening.

His neurologist now feels that some of his “seizures” are actually episodes where his brain “shuts down” because he can’t cope with what is being asked of him.

These totally mimic his epileptic seizures but if she’s right, they aren’t true seizures at all, although are definitely horrible neurological events for him.

So now if Jacob has a seizure we have to worry if 1) He is having an epileptic seizure, 2) He is having a “non epileptic event” or 3) His shunt has malfunctioned.

How on earth are we supposed to juggle all that when it looks the same for each scenario?!

At the end of the day, while he still needs an education, we always have to err on the side of caution at the minute until they tease this all apart.

That means we could be giving our child incredibly strong rescue medication unnecessarily, or exposing him to radiation he doesn’t need.

It is a huge mental load to carry and one that we are most definitely not yet working through effectively.

I can’t really find the words to describe the trauma I feel we have been through.

I feel guilty typing that because I truly know so many people have been through so very much worse.

Jacob is upstairs asleep safely at the minute; and I know how fortunate we are to have him here.

Our triplets are my husband and my whole world and were desperately longed for children.

Sometimes though, the juggling act we have to cope with gets too much and things just come tumbling down.

I’m not proud to say that I am suffering mentally from what we’ve been through and while I know counselling is probably a good idea, we genuinely never seem to get enough of a break to even organise this.

It’s been constant for so long now we are just exhausted.

I often hear people say “I don’t know how you do it!” but the truth is, you don’t get a choice.

Jacob seems to have been dealt a really rough hand and he deserves parents who won’t give up and will keep picking themselves back up off the ground and preparing for the next wave of pain.

Firefly Blog

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

Katrina Dorrian

Meet Our Blogger

Hi! I'm Katrina, I have 6yr old triplets; one who has spina bifida, hydrocephalus and epilepsy. I also have MS, so we've a busy (but happy) house!

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