He was 8 weeks old when he first went in for IV's (intravenous antibiotics) meaning antibiotics which are fed directly into his bloodstream through a line into a vein, where they open a can-of-whoop-arse on bacterial infections - they are what my husband would say, the 'booyaka' of treatment options (I have no idea if I am spelling booyaka right). IV's are regularly used in CF treatment.
He had bronchiolitus and likely secondary bacterial infections and was a very poorly and tiny boy. He had only been diagnosed 5 weeks before, and had yet to gain any real weight. He needed a PICC line to deliver these much needed drugs into his blood stream, a tiny tube threaded up his vein from his elbow right up to his chest cavity where the veins are stronger and less likely to be damaged. He needed IVs for two weeks, or more if he didn't improve, the hope was that this line would last the whole course. But it didn't. For reasons not entirely clear to me, lines get blocked, or veins collapse. So they start again. Two weeks later he came out having had lines in both hands, elbows, and ankles.
At 8 months old he had bronchiolitus again, as well as some ongoing chest infections. IV's time again. He was bigger now, and as before he needed a PICC line. His Dad and I took turns in taking him into the dreaded treatment room for these. For the first, I sobbed through the whole thing, holding him down hard so he couldn't move and cause himself more pain, while they tried to thread the damn thing up his tiny veins. For the second, his Dad held him while I sobbed outside the room, nurses trying to drag me away. Our tiny boy screamed and struggled, not understanding why we were holding him down to put him through this pain. This time took longer. The doctor was a trainee and tried first his elbows, then his ankles. After an hour and four long, failed attempts they called a consultant. He got a line in first time.
We knew that he needed the IV's, and that to do them, he needed a line. But seeing your child in pain is just incredibly hard. Did I tell you that to keep the lines fixed in place they SEW it into his skin? Yep, that's an actual stitch on each side of the clip that holds the line in place. Did I also mention that on babies this small, on this ward at least, they use NO ANAESTHETIC? Sedation or GA on poorly babies is obviously not a great idea, but magic cream or cold spray to numb the skin maybe? No, the junior doctor tells me that EMLA cream make veins shrink away from the skin, making it harder to find them. Besides, babies don't feel pain. HANG ON, WTF? Don't feel pain? Don't remember it later, maybe, don't feel it? No way.
The consultant came to see us later. He calmly sat us down (me still shaking a little, husband in shock), and calmly and very kindly told us in no uncertain terms to never let a junior doctor loose on our boys veins again, and to ask for him personally next time. He explained that yes, it is a teaching hospital, and yes, junior doctors need to learn. But let them learn on healthy kids who may have one course of IVs in a lifetime. Not on our kids who will have them often and where a needle phobia will seriously debilitate their treatment.
We've since seen that consultant on documentaries on the BBC. We love him!
We learnt that we are his champions. And whilst we hold our amazing CF team in a huge amount of respect, and are often asking our consultant 'if it was your kid, what would you do?' meaning, we really trust their opinions, we have also learnt to question things; make informed decisions; ask for second opinions; ask how many times they have performed a procedure; and most so all, never let anyone practice potentially painful procedures on our child.
Fortunately these days cannulas are much less of a problem, and thank god he has suffered no needle phobia as a result of all the procedures he had early on. He has the scars on his skin, we have the scars on our souls.
That is the advice I give new CF parents if they ask me. Be your child's champion too. Have a great day x
