My son’s CF annual review is coming up early next month. I have been meaning to write about the last one for ages, and now all of a sudden, the next one has crept up on me.
Annual review lasts for a few days, of course, at Princess Margaret Hospital for Children.
Day one consists of the usual clinic visit. We sit in the out-patients section for an afternoon and we see all the specialists on the CF team. We give the dieticians a detailed account of what he eats each day, and how many tablets he has with them. Respiratory doctors do their usual checks ( maybe an xray of his chest?) The gastroentologist will feel over his belly and review his medication. The physiotherapist will listen to his chest and make sure we are still using the right motions for his physiotherapy. The social worker will have a chat with us to make sure that we are cruising along ok and see if there is anything she can do for us.
Its long, boring and incredibly exhausting. It’s no different to any other clinic visit during the year really, (except the detailed account to the dietician) and we also take in all our equipment, like our nebulizer, to have it checked and make sure it is working properly.
Day one over.
Day two will consist of a lung function test. In the past, due to his age, he was sedated and put into a special vest, and air was pushed into his lungs, while this vest then squeezed his chest to make him breathe out hard. This basically checks to see that all parts of the lungs are being used. This year, he is apparently old enough to use a machine on his own (pictured) instead of being sedated and put into the vest. Will let you know how it goes. After the test, which usually last a couple of hours, we wait around until he is completely awake and has eaten something. This usually take a couple more hours.
Day two over.
Day three is the more invasive day for him. This is when he has a bronchoscopy. He has to fast for a few hours (that’s always fun!) and then he is knocked out cold. Doctors whisk him away for a few hours while they stick a camera down into his lungs and have a look around, make sure the lung tissue looks healthy. They squirt a bit of salty water into each side of the lungs, and suck it back up, to take samples of the mucous in his lungs. They will also take some scrapings from the back of the throat while he’s out.
This is an important test. One of the main things they would be looking for is CF super-bugs called Pseudomonas. While I’m not 100% sure what they do exactly, I think they attack the lung tissue if present.
Last year at annual review, they found a staph infection in my son. It wasnt explained to me very well and I spent an entire weekend trying to keep him separate from my other three kids. Since he was having reactions to the medications to treat it, I called the doctors after the weekend…only to find that all my efforts to keep him segregated was a complete waste of time, as staph is very common with CF, easily treatable and he wasnt infectious to the rest of the family. It just meant a few weeks of heavy-duty antibiotics (once we found one he could tolerate!)
Day three ends once he has woken up from his drugs again and has eaten substantially while keeping it down. We have to stay in the Perth CBD for 24hrs after in case he has any side effects from either the drugs or the procedure, and then we have the all clear to make our long journey home again.
This year, I will have our daughter with me while he is having his procedures, as we are still trying to figure out if she has CF or not, and we need to go over the results of a recent sleep test (that is another story), so at least I will have company…though I can see us getting bored still!
Wish us luck for a healthy review!!