Month: July 2017

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.

“Is Chester going to die” the question I have always expected might be asked and the question I have been dreading, and it caught me completely off guard because the person asking that question is Chester’s five year old brother Oakley. My only saving grace at that moment in time was that I was washing up, so my back was to both boys, neither could see tears welling up and the look of sheer terror that was now on my face.

And as Oakley does so often he stood there patiently waiting for an answer to his question. I couldn’t look but I could hear him fidgeting.

I honestly expected a few more years before having to answer questions like this. My spare of the moment answer with a very shaky voice was “Yes Oakley, one day Chester will die, because everyone dies, no one lives forever” in hindsight maybe not the most appropriate thing to say to a five year old but with very little time to think it was the first thing that came out of my mouth.

We have always been very careful not to talk about Chester as if he is ‘ill’ or ‘poorly’ except for the times when he has actually been unwell. It may sound odd, but we don’t really see him as “poorly”, even though I often find myself saying “He’s well” when people ask how he is doing, when what I should be saying is, he’s fine.

I think it’s important that Oakley sees him as he does any other child. Now of course Oakley sees us doing physio and giving Chester medicines so we have already had to explain this but in his young years and naivety he still thinks it’s normal and every baby has this treatment.

He understands that Chester has to have physio and a very basic idea of why we do it and he often asks why we can’t just take the bugs out of his lungs. Trying to find more simple child friendly ways to explain things is not always easy.

So back to that question……I noticed that he was still quiet, as if sat waiting for more of an answer or even more worryingly was planning his next question.

Luckily this time he was content with my answer as he didn’t ask anything else, although I am conscious that could have been just that his mind had strayed onto something else. But knowing these questions will be asked again is incredibly hard to take.

The hardest part when it comes to questions about CF is the complete uncertainty and unpredictability of it, there are questions we will never be able to answer, because we just don’t know. There are so many uncertainties, every person with CF is different, affected in different ways with different severity so some questions are just impossible.

Then there’s the worry that one day that person asking the questions will be Chester himself, this completely terrifies me because we will have to contend with questions that will be absolutely heartbreaking to answer and with the ability to google his condition we will have to be completely honest in our answers.

All we can do is hope that by the time those questions are asked the much needed breakthrough in treatments, which I believe we are on the verge of hearing about are a reality or even better we can tell him he used to have Cystic Fibrosis.

 

I’m not normally one for theme parks, I won’t lie they are pretty much my idea of hell! There’s the extortionate admission costs with some places even charging for car parking on top!

Then there’s the rides that aren’t included and the overpriced gift shops that you can guarantee you have no way of avoiding. Add on top hyperactive over excited children, endless queues and children going into meltdown when they get told they aren’t quite tall enough to go on the ride.

Despite all this I recently decided to treat the boys to a day out at Drayton Manor park, partly because it’s not far from where I live and also because Chester adores Thomas the Tank.

Now that Chester is 2 and being disabled he got into the park and was given a wrist band and a card which entitled him to queue with other disabled children at a separate entrance and get on a few of the rides quicker.

It was a warm and sunny day which was fantastic, but also problematic for Chester as the warm weather not only makes him sweat a lot and loose salt, the ciprofloxacin antibiotic he is currently on reacts badly in the sun causing sun burn and rashes even with minimal exposure.

Being able to ‘queue jump’ meant he could enjoy the day without any risk to his health which was brilliant. That said we didn’t need to use this on every ride as some rides didn’t have queues.

To start with I didn’t really want to use the queue jumping ticket, purely because I didn’t want to draw any attention to Chester but as the queues were getting longer and the day hotter we used it more.

I was absolutely gutted to hear people making comments and passing judgement over me and the boys as we queued at the disabled entrance of the rides.

I noticed an older lady who was talking to what I assumed was her daughter and granddaughter, was pointing in our direction, I overheard her saying that there was clearly nothing wrong with Chester’s legs so it was probably one of those “made up” conditions people these days use.

I am pretty sure people and doctors don’t just “make up” conditions!

I was really quite hurt and I almost felt like I had to justify why I was stood where I was. I was also hoping that Oakley hadn’t overheard her.

Who makes judgements like that, I was appalled and couldn’t help but just stare at her, she must have realised I had overheard her because she started to look a little embarrassed, but I just kept staring in complete disbelief.

Sadly, this wasn’t an isolated incident and she wasn’t the only person who felt the need to make such rude and hurtful comments, to the point I contemplated leaving, there’s only so many times you can hear people talking about you as if you are a fraud, with comments like “they’re clearly blagging it”, “he looks perfectly fine to me”, “people these days do anything to queue jump”.

But above all those comments the worst thing I heard all day was from another child and that was “I wish I had something so I could get one of those bands to jump the queue, it’s so unfair”. I found this really sad, especially when the parent made no attempt to talk to the child about what they had said. Had that been my child I would have had to say something. Let’s face it I’m sure anyone with a disability would gladly hand that over with their queue jumping ticket to be disability free!

Despite being made to feel like a complete fraud, which of course I am not, I stood my ground, I was determined that these people wouldn’t ruin mine and my boys day. All that mattered was that my boys enjoyed themselves, who cares if they stare and talk.

I just a find it sad that people could make such a judgement, just because you can’t see a visible disability it doesn’t mean it’s not there. I get that Chester looks so well, but looks can be deceiving, inside where we can’t see he’s putting up a huge fight.

1. “It’s just a cough” for us it is never just a cough! It may well just be the sniffles or the start or tail end of a common cold, but to our children, it could be much more serious. Our children struggle to shift bugs on a daily basis and all the treatments we do are all preventative. So, no it is not just a cough, it is something that has the potential to hospitalise our children and cause them irreversible lung damage. All too often in the playground we overhear parents telling other parents how ill their child has been in the night, yet they still insist on sending them into school where they pass on their bugs to others.

2. “It’s only a bit of mud” I get this one, I really do, mud is fun for children, everyone has made mud pies and let’s face it mud kitchens are exciting and they seem to be increasingly popular in pre-school and school settings. I often think about the fact I sound like a neurotic cleanliness freak especially when I am seen becoming visibly anxious and het up over my child being around mud. Unfortunately one of the more serious bugs that a CFer can grow is found in damp warm places, places such as mud and the bug called Pseudomonas can be particularly hard to shift. It has to be treated aggressively with strong antibiotics and eradication therapy can last months and add valuable time on extra treatments. There is also potential that it may not be eradicated and this over time can cause serious lung damage. So I get it, as much as mud is fun for children, for the parent of a child with CF it is also very daunting.

3. “Don’t you worry about the long term effects of all the medicines you give him?” Of course I do, any parent would I’m sure. I give my child numerous pills and potions every day, some of which are particularly harsh and the strength of which is often questioned by GP’s and Pharmacists. I worry everyday about the side effects from some of the medications he takes such as sensitivity to the sun and mouth ulcers. I worry about over use of antibiotics and the potential future resistance. But despite my worries which I give huge consideration to, I also have to consider the consequences of not giving them, I have absolute faith in my child’s consultants’ and CF team and I know that they are the experts in this field and I have to trust their decisions. Asking this question can add even more guilt to a parent that is already overburdened.

4. “Cystic Fibrosis, isn’t that one where they die young?” Firstly it is just completely insensitive and as a CF parent I don’t want to be reminded of the fact the life expectancy of my child is far lower that it should be, that I face the real possibility of burying my own child later in life. If you don’t know about Cystic Fibrosis, the best way to find out more is to ask, but there are far better ways to ask than this. There have been huge advances in medicine over the years and with each new drug brings new hope for further advances in the years to come.

5. “Don’t you think you are a bit overprotective?” Yes I most probably am and I think I have good reason to. As a second time mum I expected to be able to let go a lot more than I did with my first, but CF put a kibosh on that. There are numerous hazards for people with CF which can make them unwell and as a parent it’s our duty to keep our children safe and well, my overprotectiveness is just me doing that. Having to weigh up quality of life versus the associated risk is something as a CF parent I do on a daily basis, I don’t want to be the parent that bubble wraps their child and stops all fun activities and learning but some risks are too great and although you may feel the need to call the fun police on me, I am always only acting in my child’s best interest.

6. “All that extra care must be such a burden”. Yes, keeping a child with CF well and carrying out CF care is hard work, getting up earlier than required for work to make sure treatments are done, waking up in the night to do extra physiotherapy when my child is unwell, staying up late to give extra feeds when weight becomes an issue and in our case the endless hospital admissions and appointments are most definitely hard work. Making sure without exception his treatment plan is followed, whether home or away, is hard work and requires patience at times when he is not a particularly willing participant, but a burden? My child is most definitely not a burden.