Guest Blog: Our Asthma Journey

I recently discovered an excellent blog about asthma or more specially, a blog by the mother of a young asthmatic (Charlie) and their journey together. Hence the name of the blog “Our Asthma Journey”

The blog is updated regularly and gives a great insight into the life of a family who have a young child who suffers from asthma. Emma, the mother and writer of the blog has kindly allowed me to share entries on her blog for which I thank her. Below are the first few entries of the blog which started in 2016. Please have a read and I hope that you find it as interesting as I do. If you enjoy reading this please visit her blog and follow Emma on Twitter, the details of which are at the end of this piece.

The Build Up

From the age of 22 months, our little man, Charlie has visited hospital on numerous occasions with breathing related issues.

Initially we were reassured that he was presenting with a viral wheeze, something very common in younger children.  One look around the assessment unit confirmed this fact as most of the children there were hooked up to sats machines measuring their oxygen levels and some, including Charlie were being treated with nebulisers and steroids.

The third time Charlie was admitted, he had a chest x-ray which showed up an infection.  A course of antibiotics treated this whilst ventolin was given to assist his breathing. We just felt he had been unlucky and was susceptible to getting things on his chest.  He would, in all likelihood grow out of this by the time he was three.

We took the ventolin and weaning plan home (you have to be weaned off high doses of ventolin) and visited our GP within 48 hours of leaving hospital.  Our GP prescribed a blue ventolin (reliever) inhaler and discussed whether we had asthma in our family.  I was a bit taken aback, we did have hay fever and eczema in the family which alerted our GP to the possibility that Charlie could be showing signs of asthma.

This is what we knew.  Doctors can’t really diagnose asthma in children until they are about six years old but can treat respiratory problems that present as possible asthma with asthma medication after a certain age.

Following another visit to A&E with a fast breathing rate, we were prescribed with yet more anti biotics.  We went to our GP again who decided to take the step to prescribe Charlie with a preventor inhaler – a brown one to be taken once in the morning and once at night.  The Doctor told me that we were treating it as asthma.

From the beginning of what has now become an ongoing journey, our GP’s have been amazing with our little man.  Always available to sound his chest, give advice and prescribe medication if needed.  Never have I been made to feel that I was wasting their time or being too over protective.

Yet in my mind Charlie’s asthma was only a slight maybe, something I desperately didn’t want him to have and wasn’t really looking to confirm because asthma really scares me.  I know of children who have lost their lives to this, suddenly, unfairly.  Whilst the seed was well and truly planted in my mind, I tried to ignore it and looked at all the treatment as a precaution until Charlie stopped getting these breathing issues.

To keep him out of hospital it became routine to give him one puff of his brown preventor inhaler in the morning and one at night.  His blue inhaler, which never really saw the light of day was for if he presented with cold symptoms, to keep his airways open.

As I remember, he did have a very nasty cold at one point so we started him on four puffs of his ventolin every four hours day and night all over the weekend and took him to the GP on the Monday.  His chest was clear, we had kept him safe and felt pretty smug.  It seemed quite easy actually.

Summer was so good.  We spent a week in Cornwall as a family, my husband, myself, Charlie and his older brother Thomas and older sister Emily.  My brother – Uncle Ste – also came a long for a couple of days.

Charlie ran up the steepest hills playing pirates, swam, played football on the beach and his ventolin didn’t even leave his bag, though we always carried it with us.  I was absolutely convinced that this was not asthma, he was safe.

Charlie started nursery school a term after his third birthday in September 2016 cute in his uniform and carrying his school bag, inhaler and asthma information.

Nursery brought new adventures, new friends and amazing experiences but the time of year also brought the cold weather, the viruses and the problems.  Whenever we were worried our GP’s were available to sound his chest and reassure us.

I was really nervous but he was enjoying nursery and time was moving very quickly.  Then he caught a cold that changed everything.  I am not quite ready to revisit that just yet.

When he was brand new!

 

Charlie vs Prednisolone

30.01.16

Today’s battle is the third day of a five day war:  Charlie VS Prednisolone.

For those who don’t know, Prednisolone is a steroid used to prevent the release of substances in the body that cause inflammation.  I guess it calms the lungs down whilst the asthma is aggrevated to give you time to control it.

Charlie’s asthma is currently aggrevated.  He picked up a virus at the start of last week which began to irritate his lungs on Wednesday night.  On Friday we were at the GP’s trying to prevent an asthma attack.  By Friday evening though, it wasn’t going in our favour and our GP sent us to hospital to the Children’s Assessment Unit.

Charlie is fine.

We are home on ventolin every four hours, weaning down the dose whilst balancing the need to keep him safe as his lungs are still twitchy.  We are on his usual preventor inhaler, Montelukast tablets, anti biotics, paracetamol and Prednisolone.

So far since Friday, I have been kicked in the cheek, wrestled to the floor, had Prednisolone splattered across my face and clothes and had to employ Grandma as bribary (for the greater good).

Today however, Charlie seemed quite pliable.  He agreed to take his “nasty medicine” with no strings attached.  I couldn’t quite hide my surprise and practically skipped into the kitchen to prepare the medicine.

I dissolved the tablets in as little water as possible, drew it up in the syringe and came back into the living room holding the medicine in a tight grip.  I looked at Charlie, he looked up at me, I tried to ignore the sea of toys he had tactically spread across the floor creating a barrier between us.

I took a deep breath and said, “Firstly little man, I love you to the moon and back.  Secondly, I am so proud of you for taking this medicine and thirdly, if you do this like the good boy you are, Mummy will buy you a treat.”

Charlie looked at me again with his big blue eyes.  I said with the smallest hint of desperation in my voice, “Ready?!” and he replied defiantly, “no, I am backing out.”

I don’t blame him completely.  This stuff tastes vile.  I know, I made the mistake of telling him once, “it can’t be that bad,” whilst tasting it.  I couldn’t stop my face contorting, my shoulders twitching or my head jerking to one side – all at the same time.  This medicine is pink.  It has made Charlie so suspicious that he won’t even have Calpol unless he sees you take it out of the actual bottle.

So back to today, I have had to sit him against the sofa and squirt this stuff through his gritted teeth.  Some of it squirted straight back out at me and the rest of it, hopefully the majority of it was swallowed.

Prednisolone turns our sweet little lad into a mini Super Hero complete with powers- from fun loving to overly assertive, from sweet to super strong and very vocal, so I will know how successful we were shortly.

It has been by far the best dose that Charlie has taken even considering the comedy.  I remember having to help a nurse once by holding his arms and legs down to get a dose inside him.  We practically forced him to take it and I felt like the World’s worst Mother that day.  Charlie soon forgot about it, but I don’t think I ever will.

The stuff is disgusting.  I am proud of Charlie, he is taking a lot of medicine at the moment.  I keep asking how his breathing is and he keeps replying with “lovely” which means he is okay so we are going in the right direction.

I would love to discover some tips and suggestions to make it easier to administer this one particular medication though.

I do have one suggestion of my own.   Perhaps they could manufacture the Prednisolone as a chocolate drop or fruit flavoured gummy sweet of some sort complete with a complimentary shot of something for the person having to administer it!

Our little Superhero

A Bit of Light

31.01.17

We are still learning about Charlie’s asthma, what triggers it, what medication and amounts are best to control it and how to deal with it, not just physically for him but emotionally as parents.

The one promise I have said to Charlie over and over is that Mummy will keep him safe and I do have this determination to try whatever I can to protect him as much as I can alongside his medications.

I am realistic enough to know that unless he grows out of this, I am not going to be able to cure asthma but there has to be tried and tested methods that have worked for others that may help my little man.  I will at least research any suggestions made.

I was updating some friends and family on Charlie’s progress since his asthma flared up at the end of last week and one of my Facebook friends suggested I look at buying a Himalayan salt lamp.

So, I did a little reading about Himalayan salt lamps.  The most well known benefit of salt lamps is that they cleanse the air, removing dust, pollen and other contaminants through hygroscopy – a science thing where unwanted particles in the air get absorbed by the salt through moisture – though don’t ever quote me on the science!

I also read that it reduces allergy and asthma symptoms.  The argument is the salt lamps remove microscopic particles of dust, pet dander and other things so a person with asthma will notice the difference in air quality in just two weeks! (At this point I was sold and had already opened up a separate window to Amazon)

Amongst other benefits, apparently these lamps help ease coughing, increase energy levels (not that we need that whilst the Prednisolone is still in our lives) promotes better sleep, mood and concentration and a stack of other things I skipped past because I had read what I wanted to read.

– I know, I could spend a fortune on things that ‘claim’ amazing benefits in the hope that it helps Charlie.

AND I WILL.

Even if it assists only slightly in preventing an attack I would consider it money well spent.

I can’t hold him again in a hospital, his tiny eyes looking up at me whilst his little face pleads with me to make it better.  I can’t hear him whisper breathlessly, “Mummy, help me” ever again because my heart can’t take it; me being that helpless, watching his little body being that helpless.

Two Himalayan salt lamps arrived today.  One is shining in the lounge, one in Charlie’s bedroom.  They are bulky, quite ugly and taste surprisingly nice (this I discovered by accident because the salt got on my hands, don’t judge.)

You see, Mummy fixes things.  Every Mummy does, it’s our job.  This is one of the ways I am trying to fix things to keep my precious little boy safe.

We will see.

Turning the Corner

01.02.17

I am not sure if this is the same for all asthma sufferers or not.  When Charlie has had an attack, a flare up or whatever it can be described as, he tends to be unwell for about a week.  He is usually given steroids, anti biotics and is slowly weaned off his ventolin.

This last attack has by no means been his worst since this started to happen to him.  In fact, it was pretty mild in comparison to the one back in November last year.

I was even convincing myself in the hospital that he just had a urine infection and was breathing fast due to a high  temperature, at one point it spiked at 39.4 degrees celcius.  I was so taken aback when the Consultant said she heard his chest wheezing she had to convince me by letting me listen myself.

It hit me quite hard actually.  The panic when she said asthma surged up inside me, I felt gutted.  I wanted it to be a UTI, I didn’t need my husband to see and experience the asthma so mild after what I saw in November last year.

I have reacted quite badly to that experience, it has changed me a little, a lot actually and I sometimes feel that I am totally alone in the anxiety of it all.  When I panic more quickly, when I fuss over Charlie more prefusely, when I get angry, when I can’t sleep or eat with worry; its difficult for others to process.

Anyway, I am not sure if this happens to every asthma sufferer.  Charlie will seem to be unwell and then suddenly, the colour will return to his little face, a sparkle will hit his eyes and his cheekiness knows no bounds.  He becomes well again – literally in front of you in a really short space of time even though you have spent an exhausting week watching his every move, this still surprises you.

It makes the whole experience seem like a bad dream, almost like it didn’t really happen to warrant how frightening it felt.  Normally when this corner is turned there is a huge sense of relief, you can see it in Charlie as well, though he could never articulate it.

Charlie has finished his anti biotics, he has finished his prednisolone and we are down to four puffs of ventolin every six hours, I should be relaxing but I am a little on edge as he is still coughing.  That cough tells me that the virus hasn’t gone and that virus is a threat.

I have my alarm set ready for his 12.45am dose of ventolin, I also have it set for two, four, five and six hours after that time incase I am not awake because I need to check his breathing.  He is still going to be sleeping next to me in my bed tonight.

I know he has turned the corner but there is a niggle very deep inside me holding me back from relief.  I am unsure if its because I know something like Mother’s sometimes do or if the emotions from November last year are still grabbing me in a panic.

Right now, he is sound asleep, settled, snuggled and breathing “lovely” and that, right now makes me smile.   xxx

If you would like to visit and read the rest of the blog, click on the link below:

Our Asthma Journey

In addition to this you can follow Emma on Twitter @EmmDillon.

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