Asthma Parent

Since A's first asthma attack we have met some truly exceptional healthcare individuals who have helped us more than they probably know, (we've also met some shockers, but perhaps I'll leave those and their 'helpful' comments for another post when I'm feeling a little less charitable). Instead, here are just a handful of the brilliant ones. After A was first discharged from hospital I remember feeling really quite isolated in terms of what we do next and who to turn to both for her medically and to some extent for me mentally. Our local GP practice have been superb, but the turning point came when they made an appointment for me and A to see the specialist asthma nurse. She really has been an incredible support, she introduced me to the Personal Asthma Action Plan , suggested new medications for A and has always found the time to ask about us and how we are coping with the stress and strain of being asthma parents. A likes her too, (at least she did until sh...

...yet we really can't do without you! So for the third time in 4 weeks (we had a whole week off!), A is back on Prednisolone after a very nasty flare up over the past few days. I have to be honest, I'm feeling at my wits end wondering where this is going to end, three attacks in four weeks regardless of being on all of the medication we have to hand and each attack worse than the last. This time she hasn't even responded to the Prednisolone quite so quickly. At the moment I genuinely don't understand the term 'well controlled asthma', we have no family history of asthma, (so we are rookies) but as far as I understand it A is on all the medication that she can have at her age, so what more can we do? We know her triggers, we recognize early when her condition is worsening, and yet nothing we do appears to make a difference. Giving Prednisolone is such a double edged sword. When we see her condition worsening the options are; go in early with it to try to pre...

I just wanted to do a quick post about the amazing work of Ronald McDonald House Charities UK . What they do is provide accommodation to parents of children who are in hospital. Sounds very simple, but when your child is in hospital long term, or spends time on the ICU or HDU units it is unthinkable that you could leave the hospital, go home, sleep or do anything other than just exist at your child's bedside. From a child's point of view it is impossible to understand that at least one of your parents wouldn't stay with you and exceptionally frightening to spend time in hospital alone. We've only used Ronald McDonald House once, for one night. It was well run, efficient, welcoming and an utter relief to know that we were a stones throw from our sleeping daughter in the HDU and we were able to get some rest in a comfortable, safe environment. But the houses provide accommodation for parents as long as they need it, when their child is long term sick and/or they live ...

Today is one of those days where I constantly feel on edge wondering if an asthma attack is looming. There are a number of early warning signs before A has an attack, but they're all things that could be indicative of something far less serious. Today she was a bit out of sorts, looked a bit pale, coughed once or twice and had a couple of meltdowns. All of these could be easily explained by being a bit tired (baby L kept us on the go last night waking a record 5 times), looking pale probably because we didn't do a great job of washing the white and black face paints off yesterday (she was a cow, she likes cows, she wasn't 'being' a cow, just to be clear!), and coughing because she's perhaps just... clearing her throat. But it sometimes feels impossible not to panic about every cough and sneeze, run to the cupboard to check the medication stash and hesitate to take her out in the cold just in case that triggers another attack. Overall I think we're quit...

Giving inhalers throughout the night (often 3-4 hourly when things are bad) is exhausting and often a bit upsetting if you inadvertently wake the child. But it can also be both daft and hilarious. You have to be stealth. The idea is to administer a ridiculous amount of puffs through the spacer without waking the child. In hospital the nurses do this with the skill and silence of a ninja, at home we do it with the fumble and blunder of a red-bummed baboon. For example, A is sleeping reasonably peacefully. We enter and make our approach. She stirs, her Dad dives down at the foot of the bed, I jump into the doorway, but as I do A rolls right out of bed. I do that leap that you see in the films (minus the barrel roll, though I like to think it did happen) and somehow she rolls into my arms before hitting the floor. I roll her back into bed. Inhaler still not administered, parents tired, wide eyed and wondering how on Earth to give an inhaler to a child who has just been rolled on...

It looks as though things are brewing for a second attack in a week, A still has a chesty cough which is getting much more dry and incessant as the day has gone on. Her nose has started streaming again and things just look as though they're headed nowhere good. We've piled in with inhalers, but thinking of getting the Prednisolone started sooner rather than later. It would be about right, for reasons other than A's asthma, today has been one of the saddest I can remember, if you have a moment to step back and appreciate the people that you love in your life then please do.

Overall I don't want to dwell on some of the more serious attacks that A has had. We're keen to improve things for her and not limit her by harking back to 'what if's'. However if you're reading this blog because you are experiencing some of the same things, I thought some background into our experiences would be useful, starting with what actually has happened up to now. When she was roughly 18 months old (she's 3 now) A had a number of colds leading to nasty chest infections, or at least that's what the doctors thought at the time. She had antibiotics 4 times in 6 weeks and as she came down with another nasty cold I clearly remember thinking that something had to be wrong. As that cold developed she seemed pretty poorly again, but come Saturday morning she seemed so much better that we decided to go ahead with our plans to go to a wedding and have my parents over to babysit. During the wedding reception we had a couple of calls to say that she was ...

Being a parent to a very young child with acute asthma is tough. There's no two ways about it. Although the Doctors are reticent to give toddlers the diagnosis of asthma (with good reason; should 'A' wish to do certain jobs in later life then an early label of (potentially) short lived asthma will stay on her medical records for life. 'Post Viral Wheeze' at this age, we're told should not prevent her). But let's be clear, the disease we're fighting against is asthma and the drugs that we're giving our little girl are strong, scary and designed to prevent and (when necessary) improve acute respiratory distress. With this blog I want to share our experiences with anyone who might find themselves in the same situation, provide an insight to anyone who may be interested and to keep a diary for ourselves of A's attacks, symptoms, medications and anything else likely to help us in our ongoing efforts to prevent or lessen the next potential attack. ...

Before I give a bit of background on our experience with asthma, I thought I'd add a couple of useful links. Firstly, Asthma UK are an incredible charity and have a great website, excellent resources and knowledgeable asthma nurses on the end of the phone between Monday and Friday. I think that BootsWedMD is also a good site which shows appreciation for the differing types of asthma symptoms and explains quite clearly the stages of an attack which I think is particularly important when caring for a child with asthma as they cannot necessarily tell you how they are feeling and what's happening to them.   Something that's been really invaluable to us is the under 5's Personal Asthma Action plan available here from Asthma UK along with action plans for older children. It's very important to keep the plan current in consultation with your GP or asthma nurse, but in the middle of the night when you're at your wits end wondering which course of action to take next...