It’s Tube Feeding Awareness Week

I read all these wonderful families stories about how much tube feeding has helped their children.Some children need the tube placed just for a short time, while others need it for longer or even for life.

My son falls into the less talked about tube feeding category – my son uses his tube for medications*.

My son needed a tube placed when he was almost 14 years old.

He needed it then because he was unable to eat; he was having many issues and swallowing was becoming very difficult and dangerous.

To us, putting a tube into our sons tummy and feeding him through it sent a clear message – our son was dying from his syndrome and this was just another medical intervention to keep him as comfortable as possible.

We had seen how boys with his syndrome got a tube placed just before they passed away, we believed at that point in time,that our boy wouldn’t see his next birthday.

We hated that tube. Absolutely hated it.

Weeks passed and we learned all the techniques around feeding and cleaning the tube.

We learned how to work the feeding pump and even learned how to clear a blocked line.

We felt more and more like nurses than parents.

It was a dark time for our little family but as always we presented a different picture to friends and extended family members.

We told them the same things the doctors and nurses had told us.

We talked about how much of a help the tube would be, how much weight our son would put on and how much healthier he would be once his body got used to the tube.

Within his first week of being tube feed we discovered Ethans medications needed adjusting and we introduced CBD oil; which was our decision after plenty of research we felt it could only help our son.

Ethan was peg fed for two weeks altogether.

He began asking for food by mouth, he began crying for food.

Ethan was given another swallow test and it became obvious that while his swallow had deteriorated that there was still a high chance he could eat by mouth without the fear of aspiration.

We began introducing a blended diet while in the hospital, reducing Ethans tube feeds to once a day.

A month passed and our son began to put on a bit of weight.

Two months later our son was enjoying a grade two diet.

A grade two diet is a blended diet cutting down the need for my son to chew,as this was a tiring exercise for him.

Two years later and we don’t hate that tube anymore.

That tube gives much needed medications to my son- medications can be very thin liquids, which would cause my son to aspirate – with the tube that worry is gone.

That tube has saved us many trips to the ER when my son has been sick and refused fluids – it is our little miracle tube that gets fluid into his little body whether he is feeling well or not.

That tube will eventually feed my son, we are in no doubt about that but for the past two years that tube has taught me to be very thankful for what it can do – it relieves worry, stress and the constant thought of did he get enough drinks today?

It gets food into my son when he is unwell and refusing food.

It nourishes his body when it’s too weak.

It takes the pressure off of him and me when it comes to eating by mouth… and yes it has taken me two whole years to accept that the tube is here to stay even if for now, we only use it for medications and fluids when required.

To anyone who’s child may need a tube, I know how scary it is.

I know how daunting it is and how that little voice in your head will tell you that you will never be able to clean the site, turn the peg, unblock the line and remember the right rate for the pump — listen to me; you will do all that and more and what’s even crazier to think is that you will be able to do all that and still go off on a family day out.

You won’t always feel like a nurse either, you are just feeding your child, differently.

I also what you to know what a difference it does make and will make to not only your child but to you too.

It will become your norm and your child’s norm so quickly that you won’t even realise how used to it you’ve all become.

Tubes are placed for many, many different reasons- don’t ever presume that your child will never eat by mouth or that this is the end for your family life as you know it.

I wasted many weeks crying over this tube being placed and really, it was a waste of time – the crying not the tube.

That tube has lifted so many of my everyday worries when it comes to Ethans care that I wish I didn’t jump to conclusions about the tube.

I wish I didn’t fear it as much as I did.

*Some children only have the tube for a short time, others for longer and others like my son, have it for medications with the understanding that it will be there when his syndrome progresses and while that’s a horrible fact; it has taken away the worry of placing a tube when his body is already too tired and too weak for more medical procedures, I am relieved my son has the tube now rather than later.

Tube Feeding Awareness Week

This years tube feeding awareness week marks the 5th year that tube feeding has been a huge part of our lives.

In that 5 years, Amy has had an NG tube, a gastrostomy, a PEG-J, a GJ button; and we are on a surgical waiting list for a separate jejunostomy.

We have had a failed fundoplication, contrast studies, scans, all sorts or various clinics, second opinions, tests, medicines and interventions.

She has tried 8 different formulas, several versions of the blended diet.

She’s had bolus feeds, several pump feeds… and now is at a point where she is fed 24 hour via a pump into her bowel to ensure she gets as many calories possible.

If 5 years ago you had shown me a paragraph like the one above… I would have asked what language you were speaking. Because clearly that is some sort of other language.

The tube feeding journey is different for every family. There are so many reasons why someone might be tube fed.

There are many different types of tube, different methods of feeding.

No one method or type will be suitable for all. Giving someone advice based on your experience may be a futile affair.

I am really proud of how far all of us have come in 5 years. It has not been an easy adjustment.

Feeding tubes are a life saving medical intervention – without which, quite simply, my daughter would be dead. The thought of that knocks me sick.

For us, tube feeding was never optional. We were thrust unwittingly into this world with no chance for prior research.

I have met families who are the opposite… who have been advised to get the tube for additional hydration and to take the pressure off tube feeding.

They have to make that agonising decision and feel (for a while) like they are taking a backwards step. But it’s not a backwards step.

An article was recently run nationally about teddies that are adapted with feeding tubes to help “sick children” feel better about their tubes.

My child is not sick. A lot of these children aren’t sick. Some just need a little extra help with their eating and that’s all this is.

She has cerebral palsy. She has epilepsy. But she is not sick or unwell. Some children are of course… but just because my child has a wheelchair doesn’t mean she is an illness waiting for a cure.

Most of the time she is a vision of health. This a common misconception that frustrates me. I do adore the teddy idea though and have considered adapting a teddy for Amy.

To be a mum is to care for someone with great care and affection. You also become more selfless, putting the needs of your child first.

Never have I seen a more apt example of this than I have in my meeting of other special needs parents.

Tubie parents (at least ones that I have met) have formed a community of their own, sharing experiences and “hacks” and actively helping others to achieve a level of comfort for these children that most doctors could only hope to achieve.

I am in awe of so many parents I have encountered on this journey and how they’ve been thrown a curveball, but taken it and run with it, even though it isn’t what they were expecting.

There is little to no support offered to people who are met with the challenge of entirely tube feeding their child.

There isn’t a leaflet we were given, or a comforting counselling session. Nothing. There was the expectation of us to learn, adapt and live with this situation.

Year 1: Baby born unexpectedly severely brain injured.

Is ventilated, struggling to live, relies on a machine for everything. I am encouraged after 3 days to express breast milk.

We learn to bolus feed 3ml of milk via NG tube every few hours. As the year progresses we become more astute at the world of NG feeding.

Testing PH levels, eventually learning to repass the tube ourselves. Our child may not be meeting milestones, but she has mastered removal of yellow ‘nose hose’.

Many nights are spent sobbing over her cot waiting for what seems like hours for feeds to go down the tube. There is reflux, vomit, and a lot of screaming.

I’m a new mum. First time mum.

I want my child to thrive, I want to build a bond… I want to feed her. This is a tough pill to swallow.

Will she ever learn to eat? I spent and wasted a lot of time researching ways to improve my child’s swallow, or find a specialist that could teach her how to eat.

Clearly I hadn’t yet accepted that this is how it would be. These were truly the hardest days.

The restraining our baby to pass a tube, the blisters from the plasters, the stares from strangers and constant unwelcome remarks… I was glad this year was over.

Year 2: After months of indecision year 1 encouraged us to get a gtube. A gastrostomy button.

We also opted for a fundoplication in a bid to end reflux related issues. The G-tube is the best thing ever. It’s easy to replace, safe, and actually quite cute.

We accessorise with cute gtube pads and learn about granulation and stoma site care. Bolus feeds eventually come to an end – the fundo fails, the reflux demon returns with a vengeance.

During this time we try several different formulas and medications. We appear at hospital almost weekly, in tears, begging for help to stop our child crying so much.

We move onto pump feeds. We started at a few hours a day… to overnight feeds.. To eventual 24 hour feeds.

Our child being permanently tethered to a feeding pump proves a huge mental and physical obstacle to us.

Year 3: It was a huge fight, but we finally got the team we needed to discuss the future for Amy’s feeds.

The surgeon and I were in disagreement over what the issue is and what needs to be done. Tests are ordered, a peg-j in inserted.

The surgeon recommends total oesophagastric dissociation – a huge surgery. I go with my gut insinct and insist on a peg-j.

The peg-j was not ideal…. We struggled to get the meds in. A GJ button was arranged and inserted under sedation by a radiographer.

We also got a second opinion at a different hospital and were told “no child on this amount of reflux meds can be suffering gastric distress… you need to see a neurologist.”

We were completely deflated.

Year 4: For the first time, our child is gaining weight.

Sometimes dropping it again whilst poorly and not tolerating feeds… but we are getting somewhere!

We go for yet another second opinion at yet another hospital further afield… and the surgeon listened.. And agreed!!!

We are placed on a waiting list. By this point our daughters health takes a turn for the worse – epilepsy returns and proves difficult to control.

I seek out counselling to help me with the grief and PTSD caused by watching my child endure so much pain. The tube feeds no longer seem so bad.

They are just normal to us now and part of everyday life. Every now and then out of nowhere grief will smack me over the head when I see a mum spoon feeding her baby a yogurt.

I suppress the tears for when I am next alone, and continue my day with my head held high, prouder than ever of how far we have come.

Year 5: Is just beginning. I am sad that g-tube feeds never worked.

am sad only one formula can be tolerated. I am nervous for the surgery and want it over with.

But I am excited at the prospect of no more sedation being needed for tube changes, and being able to independently care for the stoma sites ourselves.

Amy gets to enjoy a taste programme at school, and we regularly offer her tiny tastes on her tongue. Sometimes she will grimace and pull away.

Other times she will do a cheeky grin and spit out what we gave her. It’s all about taking things at her pace and having tastes as a sensory treat.

“Will she ever eat?” and other similar questions are met with a well rehearsed pre-learned response.

“No. Probably not. If she did then cool. If not then oh well, she’s getting better nutrition this way than any of us ever could.”

How a Tube Saved My Son’s Life

This is probably a bit of a drastic thing to say but, Ethans feeding tube has literally saved his life.

I have lost count of the amount of hours I have spent trying to get him to drink fluids.

We’ve tried every flavour you can imagine, different temperatures, thick, thin, plain, you name it we’ve tried it!!

Every time Ethan is ill he gets worse due to not being able to eat or drink.

The worry of not being able to get his fluids up was a daily battle.

When Ethan has had midazolam he is knocked out for a fair few hours. These seizures could happen anytime, anywhere.

He misses meals and therefore misses fluid intake.

Giving Ethan medicines was always an easy thing as he was so good at taking them.

However he would quite easily cough and splutter with them.

When he was knocked out on his midazolam or poorly sleeping seizures off I couldn’t get his medicines into him.

Ethan has suffered with bad silent reflux all his life.

I spent hours upon hours winding him after every bit of food or fluid.

All through the night he would need winding as he was unable to bring up any of his own wind.

It was suggested to us by the hospice that a gastronomy tube would really benefit Ethan.

I agreed and asked our paediatrician. She was only too happy to help and said its usually her persuading families to have them put in.

I was unsure of how much it would help Ethan but I am always willing to give him the best chance.

In 2016 Ethan had his first PEG fitted. Surgery went well and we spent a couple of months getting to grips with how to do gravity feeds and give him his medicines.

In the last 3 years Ethan’s tube has saved his life so many times.

I can now get in the right amount of fluid that he needs daily.

In hot periods when he needs more I can just up this without the daily battle of trying to get him to drink it with his mouth shut!

If Ethan is knocked out on meds, I can always give him his fluids and medicines while he is asleep without disturbing him.

Ethan has always been able to manage pureed food but since the peg he has been able to eat more lumps.

Surprisingly, since not having to be forced fluids, he now drinks a little bit more thickened fluids and we can now get a good extra cup of fluid in a day.

Ethans weight fluctuates so much that his weight can suddenly drop due to not wanting to eat.

We have with ease been able to give him build up milk to compensate the weight loss through his tube.

Since the tube we have been able to vent Ethan’s tummy to relieve some wind and he even brings up his own wind now too.

You see to some it may be a small thing but to us it’s huge.

I now know that no matter where we are or what stage Ethan is at I can always give him exactly what he needs to keep him well.

My G-Tube Kid

I was nineteen when I had my first child Jaylen.

He was born with some medical complications.

The hospital where I had him decided to transport him to another hospital, that specialized in neonatal care, the next morning.

Jaylen stayed in the NICU for a month before coming home.

While there some tests were completed.

Two of the tests led to them initially having to place a g-tube as well as do a Nissen fundoplication (basically a procedure where they wrap the stomach around the esophagus to stop you from aspirating).

One was to test his sucking reflex which led them to a swallow study.

The swallow study determined that he was aspirating and he was diagnosed with GERD (aspirating is when something enters the airway or lungs.)

Before placing the g-tube they placed a temporary feeding tube which ran through his nose, down the throat and into the esophagus that end in the stomach.

They used this method to feed him until they did the surgery.

Once the surgery was finished, I remember him having this tube coming from his stomach that looked like a water hose.

It was about two days after the surgery when they placed the g-tube.

After, they showed me how to use it. I was so afraid I was going to hurt my baby.

I had to stay overnight at the hospital to be monitored while feeding him.

They had to make sure I knew what I was doing before discharging him.

They had Jaylen on a two-hour feeding schedule doing bolus feedings (a feeding method in which you pour the milk in the syringe, connected to the extension which links to the tube placed in the stomach.)

Some people also call it gravity feeding because when holding up the syringe gravity pulls the milk down.

All I knew was – I had to do everything I needed to do to take my baby home.

After getting Jaylen home I had to show my family how to feed him. For the most part I was the only one to attempt it because, just like me, they were afraid of hurting him.

Now let’s fast forward to today. Jaylen is about to be thirteen years old and he is still tube feed.

He must get a swallow study done every year to check to see what he can and can’t eat.

Right now, he still can’t get thin liquids by mouth, but he can eat some foods.

I am very proud of his progress!

Most people think because they are g-tube they won’t be as healthy as other kids.

Well Jaylen is now eighty-two pounds and has always been chunky.

The best thing they could’ve done for him was to give him that tube. And I am a happy g-tube MOM!

 

 

To Tube Feed or Not?

Should we struggle on as we are? Spending hours every day trying to get our daughter to drink minuscule amounts.

To force medications down multiple times a day.

The stress and the anguish this causes the whole family.

Should we risk an operation and scarring our daughters’ beautiful skin to place a feeding tube?

To have the ability to hydrate and medicate without causing distress.

These were the questions we asked ourselves early last year. We had reached crisis point.

Violet had always struggled with oral intake of fluids and medications but as time went on it got worse.

To the point that we were lucky to get 500ml in her a day. That was with us offering her fluids almost all day long. It was full time job, just keeping Violet hydrated.

Violet’s health was suffering, she was constantly having bowel issues, her epilepsy worsened and her general health was on a decline.

Lack of fluids was compounding all of the issues.

We were as a parent team discussing the possibility of tube feeding for the first time and it hurt our hearts.

We felt as though we had failed as parents. But the more we discussed it the positives outweighed the negatives by far.

We had made a decision but were yet to discuss this with Violets medical team.

Ironically it all came to a head that same week that we made the decision to look at tube feeding.

The day we were due to meet with Violets paediatrician, I collapsed from stress and exhaustion, luckily that was all it was and nothing more sinister.

Later the same week, Violet contracted gastroenteritis.

We couldn’t replenish her fluids as needed. She was hospitalised and she had a nasogastric tube placed.

Initially it was a bitter pill to swallow.

We had the amazing opportunity to hydrate Violet to the required levels for the first time in her life without causing her distress.

But she had this alien tube attached to her face.

It amazed me how quickly we all became accustomed to the tube.

It was just part of Violet now.

The feeding was straight forward and we settled into a new normal routine.

Violet was keen on pulling it out at every opportunity so we had multiple trips to the children’s ward or nurses coming to the house to replace them.

The hardest part for us as parents were the reactions from other people.

Violet was now visibly different, we had stares and some comments which hurt.

Luckily, I was able to rise above it just smiled at everyone who stared, after all being curious is only natural.

Long term we knew that a nasogastric tube would not work for Violet.

She pulled them out too frequently and her sensitive skin on her cheeks was terribly sore.

So, we decided to go ahead with a gastronomy after six months.

This was Violets first operation in a hospital away from our local area.

We were daunted but as always Violet was amazing and even the surgeon was astounded to see her so happy and cheerful the morning after the tube was placed.

After a very short spell in hospital we were home.

Through trial and error, we got a feeding pump routine in place that worked for Violet.

It wasn’t what was initially suggested but we’ve learned through this whole process that nothing ever goes as expected.

Violet had a few small infections early in which were effectively treated with antibiotics and a small granuloma which is excess scar tissue which was effectively treated with silver nitrate.

Violet’s stoma site healed incredibly well and hasn’t caused any issue since.

Violet has since had a button fitted which is so much better for us.

Violet has Dystonic movements and grabs at things involuntarily, this often meant her GTube was pulled, I was always scared of it getting caught.

Now this tiny neat little button is unobtrusive and is quite literally a life saver.

I was nervous and scared when I first had to give Violet NG feeds, change the tape on her face and again when I had to learn a new process for her gastronomy.

It’s natural to have that fear and it means you care because you don’t want to get it wrong.

As everything else, it soon becomes part of your normal routine and you almost forget how awful giving fluids used to be.

I cannot express the difference tube feeding has made to Violet and to us as a family.

The stress and anxiety regarding Violets fluid intake instantly disappeared. It was an all-consuming weight we had on our shoulders.

We wished we had made the decision earlier.

They Call It Puppy Love: What a Dog Has Given Our Family

The unconditional love of a puppy is a joy to behold.

Having taken the step, after much deliberation, of getting a new puppy to help our son over his fear of dogs, we are still in awe of the positive impact she’s had on our family.

His dog phobia was so bad to the point where going to the local park was becoming increasingly difficult.

We did not know what to do.

Our newest member of the family has given our son a sense of purpose having someone to ‘help’, letting her in and out of the garden, telling her off, making her sit, giving her food.

Other positives have been a sense of calm from stroking her and an additional friend to play with who will run after a ball time and time again.

It is a simple relationship, free from conflict, or complex interactions.

Her trusting, forgiving nature means that she accepts, without judgement.

There is an enduring relationship between humans and domesticated animals.

Research shows the many benefits of having a pet: increased oxytocin (the ‘love’ hormone), decreased blood pressure,  improvements in mental health from the affinity and companionship that a pet can provide.

A recent study suggested that even a pet hamster can help give individuals a sense of ‘purpose’.

It’s made it easier for us to encourage the whole family to get outside, run around and play which has to be good for everyone.

Of course there are challenges.  It is hard work. It is another ‘being’ to look after in the home that demands attention.

If you are not able to give this extra commitment then it is not worth spreading yourself too thin.

There are extra costs and if you work full time then it’s not fair on the poor animal, to be left alone for so long, when they are sociable creatures who need stimulation.

But for our family it has worked, phobia is cured, we spend more time outside, we have a new friend in doors who brings so much joy.

In fact my son has decided that her face is, literally, ‘joy’.  It doesn’t get more endearing than that.

Fears of a Special Needs Parent

In an ideal world, every mum and dad plan to raise their children for 18 years they then watch them live their own independent life for about 30 years and hope that their children will come back to help look after them in their final years.

For us special need parents this is not the case.

We have to raise our children for the rest of our lives, we then have the added pressure of making a plan for their lives when we are no longer here.

Being a special needs parent can be difficult as there are so many challenges and fears we face.

It is not just living with my son’s disabilities that can be difficult its every other health issue that comes hand in hand with his condition.

On diagnosis day I was told ​ “Ryan has a slight scaring on the basal ganglia part of his brain and is developing cerebral palsy.”​

However, today’s diagnosis is; Hypoxic-ischaemic encephalopathy ​ level 5 Quadrapilegic dystonic/spastic cerebral palsy,​ oral aversion, ​button fed​ tone management difficulties, ​significant sleep difficulties, reflux​ epilepsy,​ hearing loss,​ vision difficulties, and his latest addition to the list is his left hip is completely out of his socket.

With all these health issues comes major responsibility and the first fear I want to talk about is trusting other people watching our children.

As our children require specific daily care we have a lot of worry about finding people who we trust enough with the tasks at hand.

For myself and Christopher, we have always been lucky enough to have amazing support from people around us, they are all so eager to learn what’s best for Ryan and show confidence in dealing with him when he’s in their care.

I will admit however I do find myself calling or texting to make sure he’s okay to put my mind at rest.​

Another fear I personally face is one where some parents might laugh and think I am crazy.

Ryan is 4 years of age and he still sleeps in the same bedroom as myself and his dad in his own bed.

The thought of not being able to hear his rhythm of breathing terrifies me, the fact he could take an epileptic fit or choke in his sleep is the reason for why we have him in beside us.

I sleep a lot better knowing that I can get to him quickly if any of this did happen and as much as sometimes I do have a laugh at myself I honestly cannot see me changing this anytime soon.

I could continue writing endless amounts of fears I have for Ryan but I will finish off with my biggest fear out of them all.

This fear is one I get upset about and really struggle to speak about.

It is the fear of not having Ryan here with me anymore.​

I could not even begin to put in words just how precious my son’s life is to me and our family.

I am a very realistic parent and understand that any serious flu or infection is enough to make Ryan health deteriorate and for him to lose his little fight.

The thought of ever having to continue to live my life without him in it is unthinkable and makes me sick to my stomach and for these reasons I have never taken anything about him for granted, I cherish each and every minute and memory I have with my sweet boy.

Personally for me, raising a child with a disability is the hardest thing I have ever had to experience and will continue to experience.

It is physically and emotionally hard but it is one of the best journeys of my life.

Dear Christopher

Dear Christopher,

When we started our relationship 7 years ago I knew we would have a family together, because for the first time in my life I found somebody I love.

I did, however, picture things a lot different to the life we live today.

Thinking back to the ‘perfect’ idea of a life we had planned in our heads compared to today’s it is 1000 times more difficult but its a journey that was made for us together. ​

I want to start my letter off to you by saying THANK YOU! Thank you for giving me the opportunity to be a mum and for giving me the chance to experience growing a life.

I have bonded for 9 months with our own little person and realized what love, at first sight, is.

None of this would be possible without you.

From the day our son was born I watched you grow from a boy into the man that you are today. From Christopher into Ryan’s dad. ​

In the beginning, we both know that it was a massive shock for you- to go from doing what you wanted each day to then have somebody who relies on you.

Being a first-time dad was tough but for us, it was only going to get tougher.

The day that we found out our perfect boy was going to face difficulties for the rest of his life and never be able to live independently was the day our world came crashing down.

I worried it would get too much for us to handle as a couple and that I would be left to do it all myself.

I stupidly blamed myself every single day for Ryan’s condition, I did not understand how this had happened and I did not understand why it happened OUR family.

In my mind, I had one job as a mum and that was to look after our baby when he was growing inside me and I thought I had failed.

I feared you would think the same. Christopher from that day on you supported me and Ryan and promise me we were in this together.

From that day we continue to work together to bring up our precious son.​

I can not even put into words the bond between you and Ryan. The minute you enter to room or speak to him his face lights up.

It is no secret that he loves his daddy.

There is never a day you get upset about missing all the things a dad and son should be able to do together.

I honestly admire that about you as we both know that it is me who gets down about missing out on the ‘typical’ family things we should be able to do.

You take it on the chin and together we find new things to do with Ryan to make memories.​

There is never a job when it comes to Ryan that you won’t do.

You never miss a hospital appointment, you never miss a day of dropping Ryan off at the nursery.

You go above and beyond to make sure he smiles every single day. ​

Christopher, I now want to end my letter off to you by again saying THANK YOU!

This time I am thanking you for being the dad that Ryan needs, the dad that he deserves, the dad that will forever continue to show him nothing but love.

Love is not defined by someone’s health or well-being and the way you love our son shows this every day. ​