I am not a doctor and am only speaking from my own experiences, if you have any concerns about yourself or your child please seek expert medical advice.
Chronic Wet Cough (CWC), a term that I didn’t even know existed until Pippa was first admitted to the children’s hospital however it has quickly become a condition I’ve come to know inside out. A wet cough is classified as chronic in children if it has lasted more than four weeks and eight weeks for adults.
Coughing is a defense mechanism. It helps to keep food and foreign bodies from going into our lungs. I am sure that most of you reading this would have experienced your food “go down the wrong hole” which would have led to that awful feeling of not being able to breathe whilst coughing and spluttering. This is what was happening to Pippa from birth. Due to her low tone from the microdeletion (you can learn about Pippa’s story here) she is unable to coordinate her swallowing reflex. There is a flap called the epiglottis that covers your windpipe to protect the lungs. Pippa struggles to get her epiglottis to where it needs to be in time, which is the cause of her aspiration. When a small portion of fluids from every mouthful is going into the lungs, from every feed, over an extended period of time, you can see how you end up with very sick babies. This is why Pippa has the naso-gastric tube (NGT). As much as I hate inserting it, the tape changes and being mindful of it all the time, it has saved her life, so I will be forever grateful for that little piece of tubing!
Typically, once the source of aspiration has been identified (babies with a poor swallowing reflex can also aspirate their own reflux) the cough will start to clear up after a course of antibiotics. However, Pippa’s didn’t and still hasn’t; at 17 months old I still feel something inside of me physically recoil every time she coughs.
I must confess, I am addicted to googling and researching everything discussed during specialist appointments. It is not something I recommend; however, it gives me a small feeling of control as I truly believe knowledge is power. It also gives me the capacity to be actively involved in Pippa’s treatment plans as I have a modest understanding of the language the specialists use. If there is something I don’t understand, you can guarantee the moment they leave the room, I’m back on doctor google to find out!
Pippa has been on a combination of oral and IV antibiotics since she was four months old, the longest break her little body has had is four weeks. I try not to think too much about the possible consequences the use of long term antibiotics may have on my baby girl. I am forever asking – why do we need to keep testing? Why do we need to keep pumping her little body with all of these drugs? Why do we need to do ANOTHER chest x-ray? Why do we need another admission for IV antibiotics when all her sputum samples are negative? Why does she sound so wet but her lungs are clear? Why do we need to stop all oral fluids AGAIN? Why do antibiotics work when there are no obvious signs of infection? Our respiratory consultant Professor John “Declan” Kennedy always calmly responds with “I don’t know Hayley but she only has one set of lungs and we need to do whatever we can to protect them.” Puts things into perspective hey?
We have ruled out almost every sinister disease such as cystic fibrosis, immunological issues and the possibility of another genetic mutation. On one hand, it’s a relief, on the other, I just want to know what the cause is so we know what we are dealing with. I hate not knowing. Before COVID-19 turned the world on its head, we flew to Melbourne for one last test to rule out a rare disease called Primary Ciliary Dyskinesia (PCD). This condition affects how the little hairs move in your nose, lungs, ears and reproductive tracts; if they don’t move properly, you can’t move/expel mucus efficiently. The results take eight weeks. Even though the chance of her having this is under 1%, not knowing is terrifying. It was after this trip Missy Moo decided to add asthma and two croup attacks, which required an ambulance, to her bag of tricks. The asthma and croup fill me with anxiety as they are so foreign to our “normal”. CWC I know inside out, now there are two additional types of coughs I need to familiarise myself with and it’s scary as shit.
One small mercy I take from all of this is that Pippa doesn’t know any different. She doesn’t know her life without a cough. The common cold leads to endless nights of utter helplessness as she struggles to breathe and all we can do is try and keep her as calm as possible. I stupidly googled the actual mechanism of how COVID-19 infects the body (I am slightly addicted) and I went into a major panic for a few days about all the “what if’s” if she were to catch it. I am so grateful to live in regional South Australia at the moment where infection rates are minimal.
I’m not sure why I decided to write about this this week. Possibly because we are elbow deep in another bout of wet cough with asthma now thrown in on top, I know we are on borrowed time and will be in hospital soon for another round of IV antibiotics. Another two weeks away from my two big girls, another two weeks off work, another two weeks of no sleep, crappy food and being locked in four walls running out of way to entertain a frustrated toddler. Throw in a global health pandemic and it’s really not my idea of a good time. In saying all this, I know there are so many children and families out there much worse off than us. My heart breaks for them. I know how unforgiving our life can feel at times and Pippa isn’t a “sick” kid.
This is another perspective of the “vulnerable” regarding the COVID-19 pandemic. Medically complex children who have spent the majority of their lives fighting. There are parents who live with the reality that they are going to be standing at their child’s funeral one day. Don’t cut their time short with their babies. I know you’re bored, I know you’re lonely, I know the kids are driving you to the verge of insanity and this is so hard but you will come through the otherside, together. Families with chronically ill children might not. Stay home, please.
Love Hayley x