April – Home IVs – “Mummy, give me a biiiiig cough”
I gave a copy of my diary from January to March to the liaison nurse on my first day of treatment and asked her to read it. The CF Team at St James’ Hospital are amazing and always have been. I have been a patient under their care from the age of 16. I have been lucky enough to benefit from the very best of the NHS. However, you can’t really explain what your life entails in the 30 minute slot with a specialist. An explanation of “I’m really busy” on its own sounds ungrateful and a little pathetic no matter how many times you try to explain why you haven’t kept up to date with physio or taken your nebulisers twice a day.
Intravenous antibiotics present a particular challenge for me because my veins have never been able to support the longline or catheter. My last course required five attempts at fitting the long line before access was successful. The lines generally last a few days and then new lines are required and the cycle starts again. This has always been the case. As a child I found it terrifying. As an adult it’s unpleasant and frustrating. I always get the impression that the doctor fitting the line feels the same.
The lines are so unstable that I am not able to drive for fear of dislodging them. I am entirely reliant on family and friends for the return visits to the hospital. I know they don’t mind but it’s hard being dependent when you’re a bossy boots.
My lung function has dropped to 56%. It’s time to focus on my health. I need to be chasing H around the park and I can’t do that at the moment.
I am able to convince the doctor to put in a catheter in my hand rather than attempt a long line in my ridiculously poor veins. It works, the catheter goes in first time (another all-time low – but one I’m happier to report).
H points out to everyone she sees that “Mummy has a poorly hand” everyone at nursery, the checkout assistant in Tesco and the delivery guy who delivered the boxes of meds to the door. After nursery most nights she insists on wrapping up the other hand with a bandage so that I have a matching pair and listening to my chest with a Doc McStuffins Stethoscope.
H:”Mummy, take a deep breath”
H:”Now, do a big cough”
H:”Another biiiiiig cough”
H: “One more”
M: cough, cough
H: “OK, all done, Mummy, you’re free to go”
H has started handing the I-neb (nebuliser) to me when I cough. She presses the button before handing it to me:
“Here you go Mummy” “When the man smiles, you need to blow”
She’s referring to the picture instructions. Thankfully, she hasn’t said it in public yet.
I manage to keep my visits to the office down to two. I can’t type so there is little I can do anyway. I do manage a full day of dictation from home, by the end of which I have a very specific set of instructions for FP to enable her to produce a trial bundle for a hearing which is approaching fast.
The catheter lasts for 11 days, which is enough to increase my lung function back to 70%. Hurrah!
Let’s go to the park.