Monday, September 17

To hermit or not to hermit?

Christmas is coming, the goose is getting fat... poor goose. Well, it may not be Christmas just yet, but it is certainly into the autumnal period and the good old RSV season as many preemie parents know and dread. Before children, I had never heard of RSV. Now it plays on my mind and sits there in the back of my mind from September until March, the official "season" of coughs, colds and general snottiness.

RSV, or respiratory syncytial virus, is a virus that is responsible for causing bronchiolitus. 75% of bronchiolitis cases to be exact. It is a very common virus. Almost all children are infected with RSV by the time they are two years old. In older children and adults, RSV may cause a cough or cold, but in 2-3% of young children it can manifest itself in more serious illness, sometimes leading to hospitalisation. It causes respiratory tract infections (mainly lower) and typically premature babies and children are one of the groups at higher risk of developing complications. 

It is only just September and already Wriggles is poorly. I have been trying to keep my cool, but this afternoon cracked and flexed my manically-anxious-parent muscles to get an emergency doctors appointment after Wriggles had a period of having a respiratory rates (breaths per minute) of 60 and vomited some tiny amounts of blood with a hacking cough. Typically by the time we got to the doctor, she was barely showing any signs of chest recession and wouldn't as much as cough. The GP was actually very understanding but couldn't at that point find anything to merit further examination after listening to her chest (lungs = nice and clear at 4pm) and heart rate, which was normal. Of course since we have got back home, the hacking cough is back along with vomiting and my best friend Calpol and the inhalers we have for not-quite-emergencies-but-not-routine situations are out in full force and sitting on borderline of warranting further attention. After a few hairy moments this evening, the minx is fast asleep snuffling for England and clinging onto Christmas Hedgehog for dear life. I truly hope this passes as quickly as it came. We are on day 5 of something resembling a cold, which surely should be around a peak, and can stay safely at home not that ....other "h" place.

But it has got me thinking and worried. Did we pick this up a soft play? Baby group? The park? Sainsburys? The metro? Where, and how the blazes are we going to last winter? I know all children get poorly, that you can't wrap them up in cotton wool and they need these experiences to build immunity but there lies the problem. My little girl has had so many periods of illness, her immune system is shot to pieces so she barely has any time to regain immune strength before coming down with something else. I hope the new g-tube will help reduce the amount of chest infections, but I suspect it will not protect her airways as much as I would like during the winter. I wouldn't mind (as much) if she didn't get so poorly each time. Each and every time we end up hospitalised on oxygen, nebulisers, and often IV medicines, and a sweet shop style selection of antibiotics. She doesn't "just" do a cold, she has to pull out the big guns and go into respiratory distress warranting anything from 24 hour monitoring to help from the emergency services.

So I am worried about winter.

Last week, I would have said we would stand our ground and keep up our social life to avoid going mad throughout the winter and thumb our nose to the colds doing the rounds. It is amazing how quickly you forget how terrifying a poorly child is coupled with a more terrifying medical history. This afternoon as she breathed really fast for an hour or so, I began shaking like a leaf with fear that things were repeating. Now she is asleep still but coughing as if she was on 40 a day and crying, rigid with discomfort. 

I can't take seeing my child wired up all over again.

More to the point, I am worried my child can't take being wired up again and again. how many times can one little person be pushed?

Part of my brain says, you can't just compromise life quality by staying hermits just in case a virus floats by. Then part says, and what life quality, is being rushed to hospital in the early hours of the morning to be prodded, poked and be scare-mongered by nurses performing blood tests for the next week whilst you have cannulas shoved up your nose because you can't breathe efficiently enough just because of a virus that floated by.

Being two is not enough to fight things off. Simply put, we don't "do" colds. What would you do?


  1. Well Hun. You know I'm the extreme but I do limit smidge's social contact. Or had been and was making a really good success of it for four months but then decided to go to a baby group and wham! We all got ill. So now I'm back to having healthy friends on a rotation system. So we have regular social contact but only with friends kids who are willing to be considerate. We also go places ( with our antibacterial wipes) and order food online. For leisure we walk in the woods every morning. For songs we watch dvd's. I'm aware this sounds a bit over the top and one can never fully protect but there's a hundred fun things you can do at home or with a group of healthy babies with out going to soft play or other germ fests. Wriggles loves to do all sorts and I'm sure once she's better others will love to come round too ! Xx

  2. We're hermits. Not even my mother-in-law escapes me waving my antibacterial wipes and hand gel, much to her disgust and lack of understanding. Like Leanna, we see some people who are sensitive enough to be aware of our situation and don't come round at even the hint of a germ. And I wipe Toby's hands/toys all the time poor child! But it's far easier for me to be controlling and extreme because he's still immobile. I felt anxious and fearful reading this post, you're right on the quality of life thing, in my opinion it is worth being overly cautious even if lots of people think we're weird...the nice ones understand. But it's so hard and I really feel for you, you've been through sooooo much trauma, protecting yourself and Alice is only natural. Much love to you xxx