When you have children, each day means celebrating anniversaries and proudly watching them reach new important milestones, whether it’s catching them as their legs buckle having taken their first steps or hearing them utter their first words, desperately hoping to hear the word Mamma as opposed to some profanity they have probably heard you say a hundred times under your breath.
Every anniversary and milestone is just as important as the next and I have found where CF is concerned we have some truly odd anniversaries and milestones to celebrate.
Today is no exception, and is yet another anniversary that CF has given us, on this day 2 years ago we finally got to take our little man out of Birmingham Children’s Hospital and head home for the first time, we had our first night at home and I won’t lie, I was exhausted after the reality of the 2 hourly feeds on top of all the CF care had kicked in.
Today also marks another milestone, after 3 months of Pseudomonas eradication therapy consisting of Ciprofloxacin oral antibiotic and inhaled tobramycin antibiotic, which he was prescribed following his disastrous failed IV admission in April, Chester has finally finished this course of treatment and has so far, touch wood, come back with negative cough swabs, meaning (we hope) that the treatment has worked and the Pseudomonas has gone (either that or it is lurking and has avoided detection on the swabs that have been taken)
I can’t say I will be sorry to say goodbye to this round of treatments. Any parent that has had a child on Ciprofloxacin will appreciate how difficult it is to get the greasy stains of the cipro out of clothing when they decide they don’t want to swallow it and proceed to spit it down their nice clean clothes.
I certainly won’t miss running for cover when the sun comes out and I haven’t packed his factor “the sun ain’t getting anywhere near him” sun cream. With an imminent trip to Italy in the sun will now be much easier!
For those that have never seen cipro it comes in two bottles one a greasy, oily thick liquid, the other granules, a little bit like sand. The granules get tipped into the liquid and get mixed together, but they don’t dissolve leaving the antibiotic with a gritty texture.
The end of this treatment also means the twice daily (although not every day) fight of him having his nebuliser is over for now, which alone will save us about half an hour to forty-five minutes a day in treatments.
When the treatment plan was coming to an end, the new plan was already being discussed and made. If there’s one thing I have found it’s that life as a CF parent fits in well with the fact I like to have plans for pretty much everything.
So the discussions and planning started with Chester’s consultant to stop the nebulisers and the oral antibiotics at the end of the treatment. The plan was that he would be without the antibiotics for a month before being scheduled for a bronchoscopy in September.
The bronch will check that the Pseudomonas has gone and that he isn’t growing anything further, they will also fit him with his port at that time to save him having to have a second procedure and general anaesthetic.
Throughout the planning there was no talk about him starting back on Flucloxacillin; his prophylactic antibiotic, now I know that at aged two most CF patients stop taking this, but we had not discussed this, and as much as I would love to see him antibiotic free knowing he has been on one type of antibiotic or the other since birth, I found the idea of him not having any quite scary and to me it also signifies that he is getting bigger which for a parent, CF or not is always bittersweet.
I know that Flucloxacillin only offers a certain amount of protection; and certainly not protection against pseudomonas, I just couldn’t quite believe the day had come that that the “security blanket” antibiotic would be taken away.
The final discussion took place and the decision was made eventually that he would remain on flucloxacillin at least until after the bronch, I think I may have actually said “phew”.
The hope is now that he can stay pseudomonas free and that the bronch shows no sign of it or anything else nasty, then he will be taken off all antibiotics and be completely antibiotic free for the first time ever, which will be a scary but another amazing milestone.
Embrace the suck 