For Dan and I it was mainly a cough. For the girls, they also had fevers..... So, COVID-19? Who knows. The cough was the opposite of dry, and as any parent knows, kids get fevers all the time with a virus. We did speak to our GP, as Anouk really wasn’t bouncing back. We thought he might consider antibiotics (since it sounded like it had settled on her chest) but he explained that we may have had CV, and that we have to assume we have, so isolation is our only option. We are not convinced. In the UK, they are only testing inpatients in hospital right now, despite the ‘test, test, test’ news we hear. So we may never know (unless we can later have an antibody test).
It’s too early to guess if Isaac has escaped this infection or not (whatever it is) - we can only hope our efforts have been enough, as either way its not the kind of bug he would sail through (without intervention, and he’s so recently had *IV’s anyway) and we want to avoid hospital like the plague. As much as we clean, sterilise equipment, eat apart, keep his tooth brush and towels separate and omit hugs (and I really miss hugging my son, guys) it never quite feels enough.
In an odd way, the world is experiencing something huge, but part of this new reality for most has been part of ours for so long now.... We are used to alcohol wipes, plastic aprons, gloves and masks. We have been in hospital under barrier nursing for infection control too many times to count. We are accustomed to all those funny looks that people give you when you take a big detour around other people who look unwell, or the opposite, when he is having a very public coughing fit and people scowl at us, assuming he is contagious and should be home (the irony that we endure both of these scenarios is not lost on us). We live with the the eye rolls when people assume we are overreacting to infection risks (seriously, he really should not ever go in a jacuzzi). Perhaps, after all of this, there may be just a tad more understanding in the world, for families like ours? On the flip side, we are so touched by the number of people who have contacted us to offer help and ask how Isaac is at this time. Post Corona virus, will we all be a little more accustomed to (and understanding of) the anxiety that those vulnerable in our society live with each and every day?
Isaac and I had a good chat the other day about what the virus might mean for him (he is 15, so when I say good, I mean around 6 minutes, and these kind of chats are always better if they are instigated by him, rather than me). Knowing that he has letters coming from the government, putting him on the ‘extremely vulnerable’ list is understandably alarming, but as I said to him, these lists are vast and don’t take into account the individual; so if Isaac does catch it, and we end up in hospital? Well, that is our area of expertise, and we have a first class pass to the best team ever. We would have ended on a high five, were it not for the social distancing.
In terms of Isaac’s care, we now only have phone appointments with his CF team. We cannot send in sputum for testing in the lab as we would normally (instead, we will need someone to take it to hospital for us, where the team will pick it up from the car at the entrance). We have good access to his medications so far; he is about to start anti-fungals (as we’re coming to the end of his course of extra oral antibiotics, and he does still have fairly fruity cough) and these are being sent by post. The CF Trust have sent us a letter that we can use to explain his status, as well as the government issued letter listing him as extremely vulnerable. We have been able to register with GOV.UK to say that we are isolating and may not be able to get the supplies we need. That was a few days ago, but we’ve not heard back since. Thankfully, we have been able to get everything we need, thanks to the kindness of our family, neighbours and friends - thank you so much all.
I don’t know about you, but in one way, everyday feels the same, like badly smudged together memories. My appetite for the news is huge, but I’ve stopped taking in information. Everything feels too BIG suddenly. Add to this, the dreaded home schooling (we’ve been too ill to fully get on top of this so far, and you know what? I don’t care. They are learning in experience, through endless games, reading and art, and for now, that’s just fine. They are anxious too, and need some downtime) and working full time, days feel weirdly full and yet... at times empty. Overwhelmed yet lonely.
There are, and there always must be, some positives: Both Obie and Rosa LOVE being home and having us all together. Our garden has never looked better. We have dug and filled a pond (plants and snails have arrived, fish to follow... a great little project for all the family). We are doing well keeping active, projects are planned, we have all of this support around us, and most of all..... Isaac is well. He is well!
We are thinking of all those unwell, those isolating alone, those without their needs being met (physically or mentally), those unable to contact their loved ones, those watching their businesses go down the drain... and to our key workers, putting themselves (or those they love) at risk for others, thank you so much. Stay safe and keep in touch x
* When we say IVs, I mean antibiotics given intravenously. These treat bacterial infections, not viral ones. However, as people with CF live with bacterial infections in the their lungs all the time (in progressed disease at least, less so infants with CF) a viral infection allows the live-in bacteria to have a little party in the lungs too, which can be far more problematic long term. On the whole, viral infections are acute issues which reek temporary havoc, but it’s the bacterial after party that is more problematic, hence the antibiotic treatment, even if the acute part might be viral**. The exception here is that COVID 19 is a virus that may be as dangerous as the bacterial infections people with CF face anyway.
** I am no doctor, but this is my understanding! Always seek sensible medical advice, not the wittering of a slightly mad CF parent with more than a whiff of gin.
We had to miss the funeral of a very kind and talented friend. Here is the painting he did of our Obie - fly high Gordon. We will miss you x
Pond under construction.
