Following on from a bronchoscopy aged 20 months, Harriet came home from hospital with a new addition to her treatment regime, a nebuliser. Like with everything else, at first it looked terrifying and complicated and I was never going to be able to use it. Three months later I can safely say that I was, as usual with these things, worrying over nothing! D-Nase or Pulmozyme is an inhaled drug which thins the mucus in the lungs. At the time of its release it was seen as a major breakthrough treatment for cystic fibrosis patients so it can only be a good thing.
Generally people are a little older when they start it but because Harriet has been so plagued by virus after virus it was agreed she would start. There is some concern over whether children this young (Harriet is two) can inhale the full medication properly but I think, for the most part, she does now. Certainly in the beginning she didn’t. We had to start by just wafting it in front of her face then slowly built up to getting the mask right over her mouth. We did this gradually and it took approximately three or four days. At the time of her getting D-Nase she really loved bubbles and she would shout and ask for bubbles all the time. Because of this we decided to call the nebuliser her bubbles and four months later it has stuck!
We were told to do this treatment at least half an hour before her percussion physiotherapy so we decided to do it at tea time after she had eaten and was still in her high hair that way there was no escape! Four months down the line we still follow this routine unless we have evening plans and sometimes it suits better to do it before her morning physiotherapy session. We are not yet at the point where she will sit and hold the nebuliser herself. She has tried but won’t keep it still. It has to be held in a horizontal position so as not to spill the liquid contents. I know of a few little ones who, aged two, can do this so hopefully one day soon Harriet will too. Not that I mind doing it at all but she likes her independence and for a while anyway would see it as a novelty to administer it herself!
The cleaning process of the nebuliser is quite specific in that it all has to be washed immediately after use in warm soapy water. We are not able to touch the filter part so need to be very careful. The individual parts are then all laid out on kitchen roll to air dry over night. I know lots of CF parents do things their own way but we just do as our team have suggested. We also sterilise it in a steam steriliser which has been a godsend.
The vials of liquid come specially delivered to our house from Lloyds Healthcare which is great. We get a phonecall to arrange delivery when we are running low and a text message the day before with a time slot. We are so lucky as some people have to collect theirs from their hospital. Someone has to be in as the drugs need to go straight in the fridge too. The nebuliser we use is an E-Flow Rapid and takes two or three minutes to work, again we are so very lucky to have a really new machine as some parents have ones that take up to ten minutes to deliver the same drug. Certainly a challenge to get a two year old to sit with a mask over their face for ten minutes plus! It also comes with a mouthpiece but I really don’t think we are even close to Harriet being ready to use that. For now, she will happily have the mask and that is good enough for us.
In terms of its success, I can’t say she hasn’t caught anymore infections than normal but on the other hand I would hate to take it away and for her to be even more prone to infection. It is a very expensive drug and we are so grateful she is able to have it. If we had to buy the nebuliser (some CF parents have) it would cost approximately £600! The drugs themselves cost approximately £20 per day so not a cheap treatment at all. This really scares me as cystic fibrosis patients have to pay for prescriptions when they reach adulthood in the UK, a law decided when not many people with CF made it to adulthood. Another matter that needs to change.
Hopefuly this post will help some when they too are faced with another addition to an already complicated treatment regime, it’s really no big deal I promise!
Read how we became CF parents here.
To learn more about cystic fibrosis and ways in which you can help click here.