Malachi's story – asthma plan reaps positive results
Malachi Douds Nanapoy is a six-year-old from New Plymouth who has asthma. Malachi was born 31 weeks gestation (average is 40 weeks) and lives with respiratory conditions that impact on his health and his learning.
Malachi now has an asthma plan which he and his family follow. Through the guidance of their asthma nurse Sharani at Taranaki Hospital, they have become educated in managing Malachi’s asthma much more effectively. He only had one hospital visit in 2015, which is a big improvement from recent years.
Malachi's grandmother Vicki says, "as a family we are becoming more educated and able to manage without escalating crisis. Bouts of breathlessness and coughing are recognised earlier and the plan is actioned".
Malachi can now understand some of the triggers and helps his family to recognise the signs that he is not coping effectively. He understands that the cold wind affects his breathing and will come inside. Malachi also takes his inhalers, counts his puffs and lets his family know if it has not been done properly.
The improvement in Malachi's health has allowed him to attend school more frequently, and the teachers have started to see progress in his learning.
Malachi doesn't let his condition hold him back, and lives a very active life. He enjoys swimming lessons, is a great cricket player, and has done very well in cross country. Malachi came second in his first school cross country, when he only had to stop to get his breath once.
Swimming is important to Malachi and unfortunately it was an activity he could not participate in often as he had no breath. He is now becoming a confident regular swimmer at a private swimming school where the water is warmer and he can enjoy being part of a class and shooting off in the water.
Malachi also enjoys mega bounce and is quite skilled at riding his bike, remembering to come inside when it is windy.
“Malachi’s extremely confident in sports, and the joy it brings to him when he has completed a game of cricket is just awesome. We are all looking to enjoy more involvement in the community rather then being extremely ill and missing out on being an active 6 year old child," says Vicki.
Tomairangi's story – 89 hospital admissions yet still smiling
Tomairangi's severe brittle asthma has sent her to hospital 89 times. Here, her mum Sharon talks about her daughter's resilience and the effect her condition has had on the whole family, both good and bad.
"Our daughter Tomairangi is 12 years old. She's been in hospital 89 times – that's 272 days of her life. That makes you question things, like the amount of school she’s missed out on. Not just from an academic perspective, but everything else that she misses out on. She has friends, but these are friends for school. She never has enough time to develop her friendships. Never had a best friend. Doesn’t get invited to parties or birthdays. Never gets a visit from any of her friends while she’s in hospital. Friendships need time to grow, to nurture and deepen. You can’t really do that when you’re in hospital. Her best friends are probably the nurses and the play therapist.
My daughter’s asthma is classed as severe brittle. It’s unpredictable. It’s stubborn. It takes on a life of its own. It keeps trying to kill her, again and again. It nearly succeeded last year, but our daughter is strong, so resilient. When you have two respiratory arrests, and lose a cardiac output twice and need CPR for a total of 11 minutes and it still can’t take you, you’re superhuman. That day was the worst. I play it over and over in my head at times.
The fear is always there. Stuff like that plays with your head and makes things so much harder to cope with. The post-traumatic stress is in all of us. Me, Tomairangi, my husband and our other children. Every time Tomairangi has a bad asthma attack, every time she looks at me with sheer panic in her eyes that she can’t breathe. Every time the phone rings and the caller ID says it’s either school or the hospital, my heart skips a beat, my stomach drops and I lose my breath.
We sleep in power nap mode with one ear always open. Every cough, every cry, every wheeze, I hear them all. We probably get two to three hours of uninterrupted sleep every night, from 1 to 3 am. In between those times it’s puffers, and drinks of water, breathing exercises and coughing up phlegm. It’s tears, and fears of not being able to breathe. It’s relentless.
Our other children manifest their fear in different ways. One misbehaves at school, starts fights, gets frustrated and angry and tearful. The other goes quiet. Doesn’t get in the way, doesn’t bother anyone, retreats back into herself. They’ve seen a lot over their few short years. Spent far too much time in hospitals. Their relationship with their sister is difficult. Like friendships, it’s hard to maintain a healthy relationship when one half is never there. So when they do end up all together, it’s chaotic. Laughs, fights, tears all in the space of a few minutes. It’s an extreme roller coaster of emotions and these kids don’t know whether to laugh and enjoy it or cry and get off the damn thing.
Work is very understanding. Allowing me the time I need to look after our daughter. My husband’s work not so. It’s the same with every manager he’s ever had. Sure they’re understanding and sympathetic to start with, really feel sorry for our situation. But then one absence turns into another and another and another, and then the questioning starts.
It’s not like this for every child with asthma, but it is like this for us. It’s a hard road to travel. But you know what? Through all of this our little family is so strong. We know what’s important and what isn’t. Determined to do what we can to give our daughter the life she deserves.
We’re excited by the prospect that a cure for asthma may be found in her lifetime. We hold onto that hope. So that she can be her own person and not someone defined by her medical condition."
To help manage you or a family members' asthma, it's important to have an asthma plan(external link) in place. See your doctor and ask for an asthma plan.
Source: Asthma & Respiratory Foundation NZ(external link)
