Morning;
Anti-sickness medication when he wakes up
Inhalers (to open up his airways), nasal sprays
*Nebuliser 1 (DNAse, which is an inhaled enzyme that helps thin the mucous in his lungs)
Breakfast (with Creon, his enzymes which allow him to digest food properly)
Morning tablets (antihistamines, salt tablets, plus three medications for his tummy issues)
**Physiotherapy to clear his mucous
Nebuliser 2 (Antibiotics, Colomycin or Tobramycin, to fight his infections)
Afternoon;
Lunch with Creon again
Evening;
More inhalers
Nebuliser 3 (Hypertonic saline, to draw more water into his lungs, to again loosen the mucous)
Physiotherapy again
Nebuliser 4 (Antibiotics again, to fight his infections)
Evening tablets (vitamins, oral antibiotics, many more tummy related medications)
Night;
Possibly more Physio, depending on how he feels
*A nebuliser is an electronic device which breaks down particles of medication into smaller blobs (sooo scientific, me) which are then better delivered to and absorbed in the lungs. Each nebuliser takes him between 10-30 minutes, and he has two different machines, because of the different drugs he nebulises. We call these 'nebs', and anyone walking past our home at any given time would have a pretty good chance is hearing us yell 'neb Ise!' as his concentration on these is lacking.
**CF Physiotherapy can be of different kinds. He has small devices which he can breathe through against resistance, which help shake his lungs. Some of these he can do hooked up to a nebuliser at the same time, which help him clear his chest on exhalation, and then deliver the medication on inhalation. He also has chest percussion when unwell, which is the classic 'pat him on the back' physio that most people remember about CF, we call this patacakes.
His current prescription list is 22 medications long, which we need to ensure we have in stock at all times. And due to crazy NHS budget rules, only some of these can come from our local pharmacy, the others we need to get from the hospital pharmacy. In addition to this, he needs to take enzymes (Creon) with everything he eats that contains fats or proteins (pretty much everything aside from plain fruit or veg) because of a rubbishy pancreas he produces none of his own. This varies according to what and how much he eats, usually around 30-50 capsules a day.
There is a strict order to his treatments; for example, we want to loosen his mucous first, then help it come up, and finally throw antibiotics in to make war on the bacteria, when they have clear access. Also, many of his drugs have interdependencies, side effects, or just... effects, which mean you need to take them at a certain times of day, with or without food, or avoiding something else. This can be mighty hard to get right all the time (try giving babies antibiotics four times a day which can't be taken one hour either side of milk...!).
Reader, I can't imagine how that reads to you..... Is it a lot? Less than you thought?
To us, this is our norm. This is our good day. Our minimum. It can be much more when he is not so well; for example, he has occasional courses of IV's (Intravenous Antibiotics) - this might be because he is more symptomatic than usual, or because his lab results reveal something new (they culture samples from his mucous to see what bacteria are growing in his lungs). This means two weeks+ with an IV line in; antibiotics and physio galore.
But we're lucky, IV's are an occasional occurrence for us still; many other kids and adults with CF have regular IV's - two weeks every three months (at least) simply to keep the infections at bay. There are also other complications of CF which we don't have to deal with yet - diabetes, liver issues, problems in maintaining weight (resulting in PEG feeding directly into the tummy to cram in the calories overnight).... The list goes on, and each of these would add significantly to the treatment burden.
There is not a day that goes by where I don't think how fortunate we are to live in a time of such great medical advances, to have such a wonderful NHS, and such a supportive CF team. I even pass by our ever expanding meds cupboard sometimes and admire the neat pharmaceutical packages, so pristine and white, the syringes, the wipes, the nebuliser (retail cost £3K), all lined up and ready to join us in battle against those pesky bugs. We don't moan about these treatments, we are thankful to have them.
But it is so hard for Isaac. On a good day, the above will probably take him one to two hours. On a bad day, three to four. On IV's? It's pretty much like a full time job. Just to stay well. He is 11 years old. He wants to be out playing with his friends..... he wants to be like everyone else. He doesn't talk about CF with his friends, and even taking Creon in front of people is an issue for him. Anyone who remembers Secondary School can understand that. When I was 11 I too wanted to be like everyone else (when I was 21 I wanted to be like no-one else). Right? I am ever mindful of how he must feel, but also need to get him to do all this, because the alternative is him being less well, and likely resulting in long term lung damage. That is not an option to me. He has an understanding of how important his treatments are, I tell him, his Dad tells him, his CF team tells him, and yet he still cuts corners wherever humanly possible unless we watch him the whole time (which with two other smaller children is difficult to say the least)...... The nebuliser which he insists he finished properly while I was in the bathroom, the pathetic blows of a mouse doing his physio, the 'forgotten' Creon, which then gives him a rotten tummy, and makes doing effective physio the next morning even less appealing..,..
I get it, I really do. I get him. I know him better than anyone. And if it were me? I'd have probably done the same at 11. But it doesn't make it any easier to watch, and getting him doesn't always make me any better at reasoning with him. We have this closeness in hospital where we can talk calmly about it, and I do anything to not sound like I am nagging him, I've drawn blood biting my tongue so much. But when he's frustrated, and angry, and feeling like his life is so unfair, what to do? So I agree - CF does suck; or I tell him how many more people are worse off; I bribe, I bargain; I think up wacky new ideas to put the fun back in treatments; but sometimes.... I have nothing. I'm just mad too, not at him, but at CF, and how does that help the situation? Not one iota.
Some days there is no issue at all, he just gets on with it.
Other days I know we could have done better.
On the worst days, I'll walk the dog for hours, just procrastinating, knowing the next round awaits me when I get home.
Some nights this keeps me awake, thinking, have we done our best by him today?
To support the Cystic Fibrosis Trust who fund research into CF please click here.
I'm sat in front of my fire, with the dog on my lap, listening to this beauty, put it up loud, it's a grower, I promise. Goodnight all x
