No Answers

As a mother, I believe it is my sole responsibility to protect my children by nurturing them, filling their body with healthy fuel to allow them to be the best possible version of themselves while letting them explore the world (both of us making mistakes a long the way), create memories and learn through different experiences. So when there is something wrong with your sons lungs and his breathing without explanation you start to question everything you did from the moment you found out your were pregnant to the current day where he is still (happily, but still) suffering. I wonder if my body failed him in some way, if me wishing he was born early and it happening, (Zach was born at 38 weeks) had something to do with the development of his lungs and is now still causing the issues. We are assured at every appointment that it’s nothing overly serious, which we have come to terms with now after nearly 3 years, but no specialist, paediatrician, doctor or nurse can tell us EXACTLY what is wrong with our son.
About 12 months ago, we were fortunate to see one of the best respiratory specialists in Victoria and arguably Australia, who did all the necessary testing to give us peace of mind that Zach didn’t have some big, scary illness that could potentially take him from us. Completing those tests and waiting for the results was one of the most difficult times in our lives, all the while I was pregnant with Xavier stressing that he may have the same issues his older brother does (thankfully he has been a picture of health minus common baby sicknesses.) Tests to check for diseases such as Cystic Fibrosis isn’t painful, but for a toddler, was very daunting and scary. We went through numerous xrays, sweat tests and barium swallows, and at one point Zach actually said “Poor Zachy, I’m sad” as he screamed while 5 people including Jass and I held him down to get an X-ray of his chest. Those words absolutely shattered our hearts and still brings tears to our eyes if it’s ever bought up. 
It’s hard to explain to and reason with an 18 month old that these tests won’t hurt and that he has to sit still, breathe and cough on cue. We have been seeing and talking with the respiratory specialist and speech therapist since December 2017 which pointed us in the right direction, finally, after looking for answers since he was 4 months old. It turns out that when Zach had his tongue tie corrected at 2 days old, it was much more severe than initially thought and it probably wasn’t corrected properly. Although the speech therapist couldn’t confirm if this was the sole reason behind Zach’s issues, the next steps we took based on her assumption proved to be monumental and we had about 6 or 7 months of no sickness, no steroids, no hospital visits, and the constant wheeze and rattle in his chest hadn’t reared it’s ugly head. 
We were instructed to thicken all his fluids with a thickening powder. One of the things the speech therapist noticed straight away when she was examining his drinking and eating, was that he choked a lot drinking water, a lot dribbled out and he always sculled without taking a break. It seemed that his swallowing reflex (that babies learn when they’re first born) wasn’t completely right and whenever he drank, bits of fluid would go down the wrong way, (much like it does in adults sometimes) and was making his lungs wet which were then compromised when his immune system was down and he lacked the ability to fight off common viruses and always ended up with chest infections, bronchiolitis, croup, pneumonia and the constant “rattle” that stuck around for almost a year. 
Although, as Zach’s gotten older, his symptoms haven’t knocked him around as much as when he was a baby, the odd cough here and there always sparks a little bit of anxiety and memories of the not so distant past. The amount of nights Jass and I have stayed up watching and counting his breathing, sleeping with our hand on his chest and just racking our brains thinking of a solution to all these worries is unmeasurable.  
Since we’ve seen the specialists, he has had a few bouts of sickness, as any normal healthy child does, but one night he was really labouring to breathe and couldn’t get his words out. He was taking a breath every time he tried to talk and couldn’t finish a word because he was taking another breath. We try not to panic now because we’ve learnt and practiced that being calm is best for Zach and the entire situation. We called nurse on call (excellent service for Victorians) which we usually do, and they suggested to try ventolin if we had it. Since these problems started, we’ve been advised to try ventolin each time to see if it helps the symptoms and it never has, until this time. His breathing starting improving quickly and before we knew it he was talking normally again. 
I took him to the hospital as it was the middle of the night and Jass stayed home with Xavier. The doctor at the hospital said they don’t like to “label” children as young as Zach as Asthmatic because they usually grow out of it, but they treat the symptoms the same (which is bizarre to me, why not call it asthma and if they grow out of it, then it’s a big fat BONUS) 
We went and saw our GP the following day and they gave us an asthma management plan, a preventive puffer and more ventolin and although it is not the outcome we hoped for, we finally have a “plan” and at least a way to treat his symptoms. 
Not being able to help your child is a very challenging and disheartening thing to go through as a parent. It puts a lot of stress on every day life, adds another thing to the list of 1000 things to remember and also makes it hard to have someone babysit. If Zach was at child care or being minded, I was constantly thinking if there was thickener in his water, if he would take a sip out of someone else’s drink bottle and we’d be back where we started, but, there are some amazing medical professionals out there to help guide the journey, even if they can’t give you an actual diagnosis. 
I haven’t heard of or met anyone else that has gone through the same as us which makes it hard for people to relate and understand, but it has made us appreciate good health and also helped us “not sweat the small stuff.”
We have learnt to keep fighting for answers, for second/third/fourth opinions until someone listens to you. We were told so many times that Zach was a “happy wheezer” and sent on our way. A parents instinct is so incredibly powerful, always listen to it. 
J.x

 


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