A moving but also informative blog to coincide with Feeding Tube Awareness Week 2017. Blog written by Grandmother ” Nanna Dot” about her lovely Grandson Milo, this is her story….

My grandson Milo was born 3RD June 2012 He was a beautiful looking boy, with gorgeous eyes and he looked fine and healthy and a test ruled out as him having Patau’s or Edward’s Syndrome as which is what we had been prepared for (This severely disrupts normal development and, in many cases, results in miscarriage or stillbirth or the baby dying shortly after birth).

Milo cannot sit unaided, stand, crawl, or walk and does not speak, he does not cry, he has no head control but he has a beautiful heart.

They have suspected quadriplegic cerebral palsy, mitochondrial disease however apparently he does not have the “normal” characteristics of these and everyone involved keeps calling him a mystery…..

As Milo’s nanna I go through constant highs and lows, constantly looking up medical terms, anything that doctor’s relate to Milo to do with signs and symptoms it drives me crazy and plenty of sleepless nights.

Milo got his 1st NG tube when he was 7 months old as he wasn’t keeping milk or baby food down and constantly vomiting and infections and in and out of hospital.

So solid foods were out. This devastated me as it meant I couldn’t feed him with bottles or food but best of all I loved seeing him sucking on ice pops or ice cream. I always felt guilty cooking food or sitting in front of him as his little hands would be doing the ‘want some, want some’ signal for when babies are excited for food.

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A few months past with constant vomiting and numerous stays at hospital so they took bloods and urine samples and a random blood test found that he had a sign of a metabolic blood disorder. Random blood tests found that i had a metabolic disorder called beta-ketothialase deficiency (BKD) this is a rare disorder as there are only 60 cases worldwide.

Beta-ketothiolase deficiency is an inherited disorder in which the body cannot effectively process a protein building block (amino acid) called isoleucine. This disorder also impairs the body’s ability to process ketones, which are molecules produced during the breakdown of fats.

Affected children experience episodes of vomiting, dehydration, difficulty breathing, extreme tiredness (lethargy), and, occasionally, seizures. These episodes, which are called ketoacidotic attacks, sometimes lead to coma. Ketoacidotic attacks are frequently triggered by infections, periods without food (fasting), or increased intake of protein-rich foods

He had just started sleeping all night when the doctors explained with this disorder he was unable to fast and had to have regular feeds 24/7 so mammy and daddy set alarms to make sure i was fed every 3 hours day and night.Doctors explained with this disorder Milo’s body couldn’t fast for more than 3 hours at a time, which meant Laura (my daughter) and Stephen had to feed Milo every 2 hours day and night with milk supplements until they could book him in to do a biopsy on his thigh to send to Switzerland.

I hardly slept at nights thinking about him, god knows how Laura and Stephen were coping as no-one mentioned that you can get a milk feeding machine for home, no one told them and they took turns for weeks who stayed up doing the feeds.

How would this affect us all, how would it affect Milo’s siblings, this was going to be terrifying the constant watching him in case he slipped into a coma, but more so the effect it was having on my daughter…she seemed calm, where I was not, she seemed to understand it all and spoke quite freely about it, I was crying behind closed doors, and drinking wine where I kept venting my spleen to my husband through the pouring sobbing tears, at one time if I cried she’d cry with me and vice versa.

Not now she doesn’t cry, I don’t know what’s happened to her emotional side nowt fazes her, she accepts it, she copes with it all, and all the medical side, and medicines, she’s strong, but I’d love to see her cry, just to see her vulnerable side, just for me to cry with her.

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In July 2013 it was decided to make an incision in Milo’s thigh and take a biopsy and also fit a gastrostomy tube into Milo’s tummy and feed him every 2hrs by a machine as he was’nt thriving as he should be until we got the results back from Switzerland. (Another tube invading my little grandson’s body)

I hated seeing it, I wondered constantly what was going on in his mind but even Milo with his little body just took everything on the chin, but to me, as long as it was there I was getting further away from seeing Milo eat or drink fluids.

We got the results back months later Milo didn’t have BKD so we could now try weaning him on solids a teaspoon at a time.

And we could breathe a sigh of relief again.

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Milo seemed as though he liked the taste of food but now he had problems swallowing and the Doctors thought the food was pooling he was in so much pain after eating and then the vomiting started all over again. It was like he’d lost the sensation to chew or swallow. He soon started gagging with anything in his mouth.

In Nov 2014 it was decided Milo needed surgery, a Fundoplication operation (the upper curve of the stomach (the fundus) is wrapped around the oesophagus and sewn into place so that the lower portion of the oesophagus passes through a small tunnel of stomach muscle) this meant that if this didn’t work for Milo we had some serious decisions to make regarding his feeding.

Milo spent his first year in hospital for Christmas.milo-4

The Fundo didn’t work so in January 2015 they redone the Fundoplication operation again to stop, yet more sickness, infections and more vomiting.

Devastated was an understatement! Nothing was giving Milo a rest from the constant bile and sickness. The hospital put him on fluids to give him a break, now we had the big decision to make.

What do you want for Milo” the surgeon asked – Reply –

For Milo just to be happy in himself.

For Milo to smile,

For Milo not to be in hospital every month,

For not to see my child in pain every day,

For my child that so rarely cries, I don’t want to see his tears,

For Milo to be at home with all his siblings and parents,

The list is endless but I want most of all to let him have time to recover, be himself, because he’ll have no more fight in him to come through something that’s not working for him.

So after many discussions Milo was having a permanent Jejunostomy Feeding tube fitted. (Jej)

A jejunostomy tube is a small polyurethane tube which is inserted

into your jejunum – the beginning of your small intestines, just

below your stomach. Jejunostomy feeding is a safe and effective

method of giving liquid nutrition, fluid and medicines to people

who need to be fed in a way that bypasses the stomach.

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Am Gutted. Am Livid, Am upset, Am Crying buckets! Am Devastated. No more food ever by mouth. No more fluids ever by mouth. No more ever having the thoughts of that summer’s day seeing Milo suck on an ice pop, that’s what this means.

Nil By Mouth Forever!

His Jejunostomy was done open surgery and has a tube repositioned in a portion of his bowel to create a flow from the outside. He has a mini button in situ. Because it’s in his bowel the balloon inside cannot be inflated fully for risk of blockage.

So the button has been pulled out by Milo countless times which they think has caused the site to stretch, that’s why there’s constant milk leaking from site. If this happens we have to push a spare tube into the hole and take Milo up to the hospital within ½ an hour because the hole can close.

But he is fine most days, has no vomiting, has nothing at all going into his tummy. But he’s happy, he’s at home; he has his family around him, and he now goes to school 4 days a week.

Milo is classed undiagnosed to this day

But we all have lived through these bad horrible days, but to see his smile, his beautiful glorious smile melts my heart, and that’s down to the love and support from his mam Laura, his dad Stephen, his brother Felix and sister Mia.

This is Our Milo 4 ½ years old.

Milo although not officially diagnosed, he is treated as having M3BHA. There have been less than 10 cases ever recorded in the world. This is a progressive condition with no cure.  Milo has had countless tests to try to get confirmation but his genes, results and development have not matched any other child with his condition. This is the only named condition Milo can have as nothing on medical file (full medical data base) matches his bloods and urine. Life expectancy is very low as with all M3BHA conditions have been hit differently.

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© 2017 All rights to this story belong to the Author ‘Nanna Dot’ published via SNUG (Special Needs United Grandparents).

For more information, visit The Feeding Tube Awareness Foundation website http://www.feedingtubeawarenessweek.org/

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