In one of my old posts I mentioned the many new roles we have had to take on as parents now we have a child with Cystic Fibrosis. I thought I'd elaborate here. I would just like to add before I start that neither of us begrudge doing any of this. The way we see it, if we can do anything to make sure Sammy is as healthy as possible, we do it. As a result of this Sammy is indeed a healthy boy, in fact in some ways he's in better shape than us as he gets good food, daily vitamins, antibiotics and physio to prevent lung infections and as much sleep as he wants. We on the other hand don't eat so well, forget to take any vitamins and are sleep deprived because it turns out that Sammy doesn't want as much sleep as we'd like him to have, nor does he choose to take it in the middle of the night!
So let's see what extra things we do in addition to being a parent.
Physiotherapist: From the very beginning Mark and I were taught how to give physiotherapy. On a normal day we give 5 minutes twice a day. If Sammy is ill we do more physio each day. I think the amount of physio will increase when he's bigger as his lungs will be bigger.
My P.A. role: We go to clinic every 3 weeks so I make sure there is either someone to take or collect Joseph from school or request an appointment where I can do the school runs and go to the clinic. Mark often takes Leave from work and comes too, but if not, I might organise that someone comes with me.
As Sammy is on several medications, I make sure we always have stock of these, order more from the GP, collect prescriptions, take them to the pharmacy and collect the medicines. Sometimes I warn the pharmacist about a prescription so that they can order it in for him. I used to be all over the place with this and would be at the GPs every other week or more requesting something I hadn't realised was going to run out. Now I've sorted it so there is a monthly prescription.
Sometimes there are questions for the CF team in between clinic dates. I email them and we often have to change medication, doses or physio.
Nurse: I nearly forgot this one, it's become so normal that I forgot it's not a normal parent role. We prepare and give at least 19 doses of medicine a day. Most are given by oral syringe but the ones that are granules are given on a spoon with apple puree.
Physiotherapist: From the very beginning Mark and I were taught how to give physiotherapy. On a normal day we give 5 minutes twice a day. If Sammy is ill we do more physio each day. I think the amount of physio will increase when he's bigger as his lungs will be bigger.
My P.A. role: We go to clinic every 3 weeks so I make sure there is either someone to take or collect Joseph from school or request an appointment where I can do the school runs and go to the clinic. Mark often takes Leave from work and comes too, but if not, I might organise that someone comes with me.
As Sammy is on several medications, I make sure we always have stock of these, order more from the GP, collect prescriptions, take them to the pharmacy and collect the medicines. Sometimes I warn the pharmacist about a prescription so that they can order it in for him. I used to be all over the place with this and would be at the GPs every other week or more requesting something I hadn't realised was going to run out. Now I've sorted it so there is a monthly prescription.
Sometimes there are questions for the CF team in between clinic dates. I email them and we often have to change medication, doses or physio.
Nurse: I nearly forgot this one, it's become so normal that I forgot it's not a normal parent role. We prepare and give at least 19 doses of medicine a day. Most are given by oral syringe but the ones that are granules are given on a spoon with apple puree.
Pharmacist: Once a week we take a bottle of powdered antibiotic and reconstitute it with the precise amount of cooled boiled water.
Dietician: This is a new addition to our roles as we have started weaning Sammy. We have to work out the dose of an enzyme called creon for every meal Sammy eats. There is more about this in my last post. On the move
Well 5 extra roles! Of course I'm not saying we do any of these things anything like the professionals, just that we have taken on a little bit of all of these roles. As a result though Sammy is really thriving and does everything full pace.
A special thank you has to go to our wonderful team of real CF professionals and our pharmacists for teaching us how to do a little bit of what they do.
A special thank you has to go to our wonderful team of real CF professionals and our pharmacists for teaching us how to do a little bit of what they do.
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