A day after we were told Samuel may have Cystic Fibrosis (CF) we were asked to go to the Royal London Hospital to have a sweat test to confirm whether Samuel had CF or not.
Although we knew that there was a chance that the sweat test would come back showing a negative reading for CF, we both knew deep down that the initial suspicion raised by the Guthrie test would be confirmed, and so it was. The test itself is fairly simple - put some sweat-collecting discs on the patient's arms wrap him up in as many layers and blankets as possible and wait half an hour for him to sweat as much as possible. The sweat is then analysed and if it has very high levels of salt, a diagnosis of CF is confirmed. Once Sammy's results were back and CF was indeed confirmed, we began to get to know the specialist team that will become such a vital part of Sammy's life in the coming weeks, months and years.
We had already met the two specialist nurses, one of whom broke the initial news at the home visit, and the other who took us through the sweat test. We then spent some more time with the consultant, the dietitian and the physiotherapist. The specialist nurse and dietician introduced us to a medication called Creon, the first of many medicines that Sammy will need to take throughout his life. As he gets older he will take the Creon as capsules but for now we have to spoon a tiny amount of it onto the back of a spoon that has been smeared with apple puree.
|Some of Sammy's medication.|
Sammy also had some blood taken for further tests and also to determine exactly which type of CF gene mutation he has.
It was a very long day and there was a lot of information to take in but we left feeling very supported and impressed with the professionalism and dedication of the CF team, and with an appointment to return a couple of days later for his first clinic appointment.
If this is the first time you are reading this blog, make sure you read our Introduction page and our Early Days page.