Tag

gastro

Feb 08
2

On eating and diets and feeding tube awareness week

By | #teammikaere | No Comments

It’s Feeding Tube Awareness Week this week – it’s where I’m allowed to shake my fist at strangers for looking so horrified when they realise Mikaere has a tube in his face. They go from smiling in anticipation as they peer into the depths of the buggy to pulling a face and looking away, not making eye contact. Or there will be the weird whispers (I can HEAR YOU) about how ‘that baby has a tube in his face’.

Kidding. I won’t shake my fist but I will give an epic death stare.

My kid has a feeding tube, yes. Bar three glorious/terrifyingly difficult weeks before he went into his seizure coma, he’s had one his entire 15 months. Without his tube there would be no eating, no meds and no thriving. That’s what the tube is there for.

I’ve talked about Mikaere’s NG tube before. How it works, what it does (delivers medication and food into his belly, by passing his mouth/throat. Which means it’s got nothing to do with breathing – probably the second common comment after the obvious ‘theres a tube in his face’). I’ve also talked about how we’re still waiting for the next step – a gastrostomy (where of instead of down his throat a tube will go through his abdomen straight into his belly).

I’ve even talked about safe feeding, and how a few months back Mikaere was so ill, it wasn’t safe to eat and he was declared nil by mouth. I’ve never been more grateful that Mikaere had a tube where we could still feed him.

As it stands, Mikaere is a different kid today. SO different from that sick little baby. His swallow is awesome and safe he’s protecting his airway like a CHAMP. He’s eating maybe half his feeds orally.

However, the things Mikaere is eating isn’t like a neuro-typical kid. No finger foods. Nothing solid. It’s all pureéd goodness and formula. Also… as a side effect of him being super ill beginning of December, Mikaere lost a lot of weight.

He’s been gaining, but he’s not anywhere near where he should be. As an example: Mikaere is height wise in the 98 percentile range. He’s LONG. Super long. Or tall, I guess is what you’d say if he was standing upright. But weight wise, Mikaere is below the 25 percentile. He’s skinny. He’s lost all his baby weight.

So we saw our nutritionist and looked over his diet, and while we’ve introduced purées it’s not been quite enough.
Our dietician has suggested an older kid formula equivalent with more calories… but it feels less like a formula and more like a “nutritionally complete” chemical liquid stored in tiny plastic bottles.

Other neurotypical kids aren’t on it, why does Mikaere need to be? So instead of chemically made up formula, we’ve been stepping it up. I’ve started introducing other things. Calorie dense foods. Avocado. Cream. Cheese. Honey. Chocolate mousse (that one goes down a treat). He often gets a pudding after meals. The calories, they are going in. Take that, nutritionally complete chemical formula.

Having that conversation with our dietician wasn’t particularly easy. When I talked about a blended diet she practically panicked and said ‘let’s not be too hasty’. But here’s the thing – when I start weaning Mikaere off formula, I’m not going to replace it with chemical milk. I’m just not going to. I hate the idea of feeding it to him.

I know that the blended diet is controversial (apparently the tubes aren’t made for blended food… only formula. Does that not sound like the biggest line of bs ever? If it is blended correctly it’ll be fine and unlikely to block the tube). But as far as I can tell, considering that Mikaere is eating part of his meals orally, we’re headed for a blended diet.

Which is to say, a blended diet through a tube. No formula. No weird replacement chemical milk.

And I know. I know this isn’t a thing you usually have to think about it – unless you’re knee deep two feet all in the world of special needs, tubes and feeding and weird chemical older kid meal replacement formula are not things you need to think about.

So, in the interest of Feeding Tube Awareness Week – next time you see a kid with tube, please smile and say how cute they are. When you see a parent feeding a child with a syringe through a tube that goes into their belly – don’t look away. Smile at them. Go say hi, say that the green goop looks delicious and their kid is the most adorable you’ve seen. If going up to talk is too much, just meet their eyes and smile.

I promise it’ll make their day.

 

Jan 26
0

On the gastro!

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The day after I posted about the previous gastro attempt we got a letter in the mail asking us to be admitted the following week – we were going to take a second shot!!

The paediatric surgeons were lined up, Mikaere was first. The adult MRI machine below the paediatric OR was booked and scheduled just before the surgery.

We signed all the forms, did all the fasting, and after a sleepless night (are hourly obvs on a healthy child really necessary?!), woke bright and early, was gratified to hear there were currently TWO paediatric intensive care beds available and we waited for our friend the anaesthetist to come by.

The look on his face when he walked in gave it all away.

The MRI Machine was broken. BROKEN. We had a choice, we could either do the gastro without the MRI or we could retry at a later date.

It was a no brainer, at the risk of it all go wrong with the anaesthetic, we’d purposely organised everything under one anaesthetic, including skipping the peg and going straight to a button.

Having the MRI under a second anaesthetic wasn’t in the plan, and we weren’t willing to risk it.

So we packed up and came home. For the second time.

When our nurse found out, she laughed. It set the tone, because of course we were frustrated but, this just seems par for the course. When I asked how frequently the MRI Machine broke, our guy said he’d never known it to be out of action, ever.

So off we go. No gastro as yet, we’re waiting for the stars to align.

Jan 10
1

On that time we almost got a gastrostomy

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It had taken months and months of planning – Kai was going to have an MRI and a gastrostomy under one general anaesthetic.  We need the MRI to set a baseline for any treatments we have going forward. We need the gastro to improve Kai’s quality of life and reduce the risk of drowning him every time we feed him. But getting the radiology team and the paediatric surgery team on the same page to do both procedures under the same anesthetic has been a massive wrangle. In the end it was two wonderful anaesthetists who we met in our time in intensive care who came to our rescue.

They agreed – because of the dreaded NKH and how kids with NKH respond to anaesthetic and ventilators we want to reduce the risks. So doing both procedures under a single anaesthetic was a good idea (woohoo!). They got the surgeons to agree it would be best, for Mikaere, to go straight to a button so he wouldn’t need a second anaesthetic down the line. They found a spot in the schedule of one of two surgeons who were willing to skip the PEG and go straight to a button. They convinced the radiology team to let us use the adult MRI machine, because it was directly underneath the paediatric OR’s, and they wouldn’t need to transport Mikaere across the hospital unconscious (something that is quite frowned upon). They convinced both teams to be free on the same morning, and to bump Mikaere’s procedure to first thing to reduce the waiting time and the time Mikaere would be under.

The anaesthetists suggested a loophole to fasting – which we trialled beforehand. Just to see how Mikaere would react to a stomach full of dioralyte with his caustic medications instead of food (because we know he doesn’t tolerate them on an empty stomach, and if he doesn’t have them we run the risk of seizure comas, which is the opposite of what we want to happen when he’s under an anaesthetic). We went into hospital a day before the surgery was scheduled to make sure the fasting went without a hitch. And if it didn’t they had the back up plan of IV meds, ordered in especially for Mikaere at great cost.

It took several months of planning, cajoling and begging to line up all the dots, and we finally finally finally got the go ahead.

And so, we were in hospital. Waiting for our gastrostomy.

Except (there was always going to be an except, right?) – it’s the middle of winter, and kids all across the country are having a tough time breathing. There was not a single intensive care bed free for after the surgery. Because Mikaere is likely to have difficulty coming off the ventilator, he needed a PICU bed. And with no PICU bed, there could be no surgery. And there was not a PICU bed available. (Well… that’s a bit of a lie. There was a PICU bed, but it was needed for a child with a malignant brain tumour. I think it’s absolutely right that child got the bed rather us, with our elective surgery).

To hammer home how slammed intensive care is at the moment, we were told they just sent a child down to South Hampton (an hour and a half away…) to the last intensive care bed they had. The next closest intensive care bed available for kids was Nottingham. NOTTINGHAM. It is unbelievable how slammed the paediatric intensive care is right now (and how horrifically underfunded the NHS is that no centre can afford to open up a unit with more beds).

So. No gastrostomy. Our anaesthetist was so frustrated about the lack of intensive care bed spaces. It’s a real problem, hey. I didn’t even know. For me… I was a bit sad and quite a lot relieved. Sam and I had to have one of *those* conversations before the procedure. We sat in the dark by Mikaere’s hospital bedside and had one of those Quality of Life discussions. There is the real possibility that Mikaere won’t make it off the vent after going under an anaesthetic. One of the decisions we have to make was how long do we allow Mikaere to stay on a ventilator without waking up before we try extubate. It’s a very scary decision to have to make, and sitting in the dark I really didn’t want to make it. I still don’t want to make it, not really. Trying to make a decision of letting go is tough.

Call me silly, but I’m grateful we don’t have to make that decision right this minute. That we’ve got a small reprieve away from risks and quality and the medical everything. We’ll tackle it all when it comes.