Hi everyone, I’m sorry it has been a while….but it’s been a bit rough around here lately.
Cameron’s health hasn’t been the greatest for a while now. A few weeks after our last annual review, he got very ill. I hadn’t seen him that sick since he was diagnosed! We found out his bronchoscopy had results showing he was growing Staphylococcus (staph), which can cause major havoc on CF lungs.
We started nebulizer antibiotics, which showed good results for a while.
He is now coming into his fourth week of nebulizers, but in the last few days, he has gone downhill again. He is coughing a lot, breathless, has no energy, grumpy as hell and off his food. This has caused us some major concern!
We are just waiting for two more new antibiotics to arrive from the specialists in Perth. One is an oral antibiotic, designed specifically to treat staph infections. The other is a very strong nebulizer antibiotic (again, designed specifically for staph), which when it arrives, we have to arrange with our local hospital to administer the first dose so that he can be medically monitored for any side-effects. Providing it all goes well in the ER with first dose, we will be continuing them at home. So for the next month, he will be on four different antibiotics!!
I am glad that we have narrowly dodged a hospital admission at this stage, though I have this niggling worry that it will inevitable. Please wish us luck and we welcome all healthy vibes that are sent our way!
I will keep you updated with his progress when I can.
We live with CF every day. We know the risks involved, what might or even what WILL happen during the journey of this condition. But knowing it, and being AWARE of it are two very different things.
I constantly talk about CF. I raise awareness as much as I can. I try to stay up to date with medical updates. But when your little one is very sick because of the condition, you remember, it’s not just about being knowledgable. The “la-la land” bubble bursts and all these things you “know” about are an “in-your-face” reality. This is my son’s life. This is his permanent battle. THIS SUCKS!
While we are dealing with this, the dirty “C” word has infiltrated itself into the family. No…not that dirty “C” word…..the other one….cancer. I don’t want to breach the privacy of the family member who has been battling this for a while by revealing too much on my blog (and I hope they don’t mind too much that I have written about it right now) Our head spaces have been zooming all over. We have also had to come to terms with the fall out of this nasty, evil condition as well.
My own health hasn’t been the best lately either. I am currently trying to quit smoking. I have to do this, I need to do this….I WILL do this. But like previous attempts at quitting, my lungs go spastic on me. I always get chest infections when I attempt to quit. But a recent incident brought home my own mortality.
For a week, I was tight chested, wheezing slightly….the symptoms I usually get in the days after my last cigarettes. But three nights in a row, I couldn’t lie on my right hand side (left hand side or stomach was fine, as was upright…I could breathe). On my right side, I would instantly stop being able to breathe and would go into a coughing fit that would take half an hour to recover from. I tried to hold out until Monday, when I could see my doctor, but on Sunday morning, I woke up on my right hand side. It took forever to be able to catch a breath. I was legitimately worried about dying right then and there….so I took off to the emergency room.
I was treated very thoroughly…more so than I ever have before. I had three nebulizers to relax my airways, and two steroid tablets. They did a chest x-ray, which came back clear and gave a sputum sample. They even inserted a canula into my hand, gave me a fluid drip and took blood to test everything from white blood cell counts, to salt and insulin levels. It didn’t feel like an asthma attack, but it didn’t feel like a usual chest infection either. While they treated and got rid of most of the symptoms, most of the tests came back clear, so we don’t know exactly what caused the respiratory distress yet. I have to call for the last few results tomorrow…so hopefully I get some answers.
While I am feeling much better, the experience scared me greatly. With Cameron’s current health scare, plus the cancer in the family, all I could think of was “I am not allowed to die! I can’t do that to the family…not now! I am too young! My family is too young for me to go!” I came to realise, like most mothers, while I am very good at looking after my family, I also need to look after myself! I am getting back on track with my diet, the cigarettes are in the past, and I need to look after myself better mentally and spiritually as well.
I have been under a lot of emotional stress lately. I am run down. My husband and I have started scaling back our workload a little to take the strain off. This is already an immense relief. I need to make more time for my family.
I need to make more time for ME!