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The decisions I don't want to make

The decisions I don't want to make

By the time this blog goes live, all being well Jaxon would’ve had his surgery that he’s waiting for.

In May I made the difficult decision to have him placed on a waiting list to allow a surgeon to place a feeding tube directly into his tummy.

A gastrostomy.

I put it off for a while, Jaxon has been through so much in his short life that I didn’t want to put him through the discomfort that surgery brings.

I quickly realised that Jaxon wasn’t going to transition onto oral feeds any time soon, if at all, so surgery at some point is extremely inevitable.

For most children, the insertion of a G tube is a pretty straight forward, simple surgical procedure that takes about 20 minutes to perform and would normally only involve an overnight stay in hospital.

However Jaxon is more complex than a neurotypical baby which means the risks that surgery carries are a lot higher for somebody like him. He’s also very small for his age, at almost nine months old he weighs less than 6kg.

But the hope is that with surgery, he will tolerate his feeds a lot better and he will go on to pile on the pounds and thrive.

It will mean the NG tube will come out of his nose, his beautiful face will be free of tubes and tapes.

The irritation that Duoderm and Tegaderm cause him will be a thing of the past. It will mean we can leave hospital as he will no longer have to be monitored on overnight feeds.

It will mean he doesn’t have to deal with the discomfort that having a tube down his throat 24 hours a day brings.

It will also mean he will have to be put to sleep. It will mean he will have to have a hole put in his tummy.

It will mean he could end up on the high dependency unit if things go wrong due to his already very complex medical needs. It carries the risk of infection.

An infection that his body might not be strong enough to fight. The risks are small, but things are more likely to go wrong for a baby like Jaxon.

Since Jaxon was born I’ve had to make several difficult decisions.

The hardest one I ever had to make was the decision to sign a DNR when it wasn’t expected that he would survive coming off life support.

That was what we believed to be in his best interests at the time and I don’t regret it.

We decided after days and days by his bedside, with wires and tubes everywhere, if he wasn’t able to fight any longer that the kindest thing we could do was let him go peacefully and not prolong his suffering by resuscitating him again and putting the tube back down his throat.

Thankfully he had other ideas and almost nine months on he’s still here with us.

The decision to electively put Jaxon through surgery is the second hardest decision I’ve made since he was born.

The pressure to make the right decision can feel suffocating at times. If I don’t allow them to perform this surgery then he’s stuck with the discomfort that a nasogastric tube brings.

If I do allow them to go ahead with the gastrostomy then I’m possibly risking his life if things go wrong. It’s a pretty straight forward operation but Jaxon isn’t a straight forward baby.

Therefore the risks for him are a lot greater and that weighs heavy on my mind every single minute of the day.

I wish I didn’t have to make this decision. I wish I wasn’t filled with anxiety over impending surgery.

I wish my baby could eat orally. But he can’t and I don’t know if he ever will so this is in his best interests.

When the anxiety smashes into me I have to remind myself that I’m doing this because it’s what he needs and in the long run it will be better for him.

I’ve sat on my hospital bed and thought about cancelling the surgery. I’ve wondered whether Jaxon is too small to be going under the knife.

The anxiety gets the better of me and I start ruminating on all the reasons why this is a terrible decision that I’ve made.

Then in the next moment I switch, shake my head in anger at the fact I’ve even contemplated putting a stop to him having the NG tube removed and the anxiety goes the other way.

What if they need the HDU bed for an emergency? What if the surgery gets postponed for another month and we’re stuck in hospital again? What if for some reason it doesn’t go ahead?

It’s exhausting. The way my mind works at the best of times due to having a personality disorder is like mental torture, it’s a million times worse when I’m faced with stressful situations such as these.

It feels like we’re damned if we do and we’re damned if we don’t.

If Jaxon does have it done and it goes wrong then it doesn’t bear thinking about.

If he doesn’t have it done then we are stuck here in hospital whilst the world passes us by because Jaxon can’t go home whilst he’s having overnight NG feeds.

So as I go to sleep the evening before his surgery is scheduled to go ahead, I’ll stroke, kiss and touch his tiny tummy, I’ll hold him close to me and keep everything crossed that it will go as smoothly as it possibly can.

 

Firefly Blog

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

Emma Louise Cheetham

Meet Our Blogger

I live in Stockport, UK. I have Borderline Personality Disorder and Generalised Anxiety Disorder. After years of therapy and getting back on my feet I became a voluntary peer support worker supporting others with mental health issues. Then Jaxon arrived and my life changed forever.

View Emma Louise’s Profile

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