This date is very significant to our family.
At 5pm tomorrow evening (the time I was told the massive news), it marks the two-year anniversary since my son was diagnosed with cystic fibrosis. That was the night that our family’s lives were irreversibly changed.
If you want to read more detail about that eventful night, you can read about it here. I have been told it is a bit of an emotional read, it was certainly emotional for me to write, and it took quite a few hours to get the words out.
But believe it or not, the last two years have been amazing! Any expectations about what could have happened in this period has been blown to smithereens!
I was fully expecting to have had at least two or three more hospital admissions racked up by now. But he hasn’t been hospitalised since his diagnosis. Sure, there have been a couple of close calls, and of those times, only once were we starting to figure out plans what would happen if he had to go to hospital in Perth (reminding you, Perth is 4-5 hours away from our town) How would we get him there without taking too much time away from our cleaning business, or taking the other kids out of school, or leaving my husband without the family car? Who would look after the kids while I am in Perth chaperoning my son in hospital and my husband is working the early, and late, hours he does?
These are questions we have to answer by the time his next admission comes around. Being that it has been so long, and he has thankfully done so well, I am expecting a bump in the road soon. It’s not a matter of “if”, really, it’s a matter of “when”. So I guess we really should have some contingency plans in place.
His gastrointestinal (a.k.a. his guts!) problems are an ongoing issue. It can be difficult sometimes to pinpoint what is going on, Daily inspections of poop are a fun job in this house (sorry…I know that’s the last thing you want to read about! But its the first sign for us when something is wrong.) It could be caused by any number of things. He may not have had enough tablets (the digestive tablets that break down the fat in his food. He is currently up to about 25-30 a day), or maybe he has had too many and not enough fat in his food.Has he had something with dairy in it? (as he is also dairy intolerant) Is it a virus, and at what point do we worry?
Daily physio goes…well…ok…I guess. There are certain positions he doesn’t like me patting him down, he is either ticklish, or grumpy. Very rarely do I catch him on a good day where he will lie there and take it. It can be a ridiculous ordeal sometimes, as it usually takes my entire body to be able to pat down his little chest. I have to sit in the recliner, one arm around holding down his shoulder, my legs wrapped around his body, holding the end down so he will stop squirming around enough for me to work on him. Of course, it ends up taking twice as long as it needs too, and a lot of yelling by both of us, but I figure when he is yelling, he is taking deep breaths to do so, which is encouraged. So he can yell and scream as much as he likes!
As far as I am aware, he still maintains full lung function. His annual review isn’t until August, which is when the specialists do lung function tests and a bronchoscopy (which is a camera in the lungs, and they also take mucus samples and scrapings from the back of the throat) These test for CF super-bugs. But I will go into more detail about that when annual review comes up.
So to the family, who have babysat while we take our long trips to Perth for checkups, to friends who have been there for emotional support, and also, to the strangers, such as yourselves who are reading, for taking an interest in CF, and supporting in your own way…THANK YOU for the last two years!!!
Fingers crossed the next two years go as well…but Im sure you will be kept updated 😉