We realise we’ve been updating the blog quite a lot.. This is just to get it started and so people can see what it is we are going to start fundraising shortly for!, we have been asked a lot of questions about Stanley and we will try and answer as many as we can within the blog! ( people are welcome to message us with questions or ask questions on the blog by commenting and we will try to include answers within the posts we put up ).
One of the questions that has cropped up a few times is what treatments does Stanley have to have each day?
usually in the morning when Stanley wakes up and in the evening before bedtime we will give him his dose of antibiotics, as it stands from now until the age of 3 years old he will have to take antibiotics twice a day this is a prophylactic dose in order to try and prevent any infections he might pick up. ( people with CF are very prone to infections) The CF team have a zero tolerance to coughs! who knew that someone with a chronic lung condition should never have a cough hey?! – But it turns out they shouldn’t! At the first sign of a cough or cold Stanley will have a cough swab taken and a swab from his nose they will then be sent off in order to determine if his cough is being caused by a virus or a bacteria and his antibiotics will be changed in order to treat effectively.
If at any time he were to have a cough (as he does at the minute!) , physio is upped from once a day to twice daily. His physio consists of using a PEP mask (PEP stands for Positive Expiratory Pressure) It’s basically a face mask that comes with resistors (as seen in photo above) it works by Stanley breathing out through the PEP mask which builds a pressure up in his lungs (makes him take deeper breathes) and is measured by a manometer, This helps to keep his airways wide, allows air to get behind any sputum and help to move it upwards and for him to cough it up – should there be anything to cough up!
There are several different coloured resistors, each resistor has a hole in it. The larger the hole in the resistor, the harder it is to maintain the required pressure on the manometer, Stanley is on the easiest one at the minute because he’s so little but this will change as he gets older!
Once he has finished the required time on his mask he will then have the second part to his physio, this is where he is bounced up and down on your knee and on the 3rd/4th bounce you squeeze his ribs (baby’s ribs are really squishy!) whilst bringing him back down on to your knee with abit more force and repeat. Basically it’s like your coughing for him! because he’s so little it helps him to bring up anything that might be sitting on his chest. at the minute he doesn’t mind the mask at all and is really laid back when it’s on.
(good job really!)
The pancreas makes enzymes that break down proteins, fats and carbohydrates in your food which helps to absorb nutrients however Stanley’s gene type means that he is pancreatic insufficient (the mucus caused by CF blocks the small tubes that transport the enzymes out of the pancreas meaning he struggles to absorb nutrients) this is why he has to have enzymes before every single feed each day, around 8 times a day, they look almost like gravy granules and we give him these on a spoonful of apple purée which he loves! – although we do get some strange looks in public when people see you giving a newborn baby pureed food! when he is older he will take these as tablets, they ensure that the nutrients he needs are absorbed in order for him to thrive and gain weight- This explained why his weight dropped when he was born and why he struggled to gain anything at all before being diagnosed with CF. When he had his initial diagnoses he was a tiny 4lbs13oz now five weeks later and with the help of a high energy milk and his creon (enzymes) he is now 8lbs4oz and finally starting to be plotted on the growth charts where he should be!. considering he’s a small baby he defiantly loves his milk! It’s really important for people with CF to maintain there weight or in babies cases to gain weight at a steady rate. it’s a sign things are working properly as they should.
As nutrients can struggle to be absorbed Stanley has to have daily doses of various vitamins. He takes these in two syringes a day.
People with CF loose more salt and water in there sweat which can cause dehydration – This means that up Until Stanley is 1 he must have a salt replacements every day and after that he will have to take it every year during the summer months when the weather is warmer.
He then takes medications for reflux which are tablets that have to be dissolved and then made up in a syringe to help him to keep his feeds down and to ensure he carries on gaining weight. once we’ve done these all the syringes have to be sterilised and his mask washed in order to start all over again!
We do try and give medicines in the morning most days, it’s then done and we can get on with the rest of the day, obviously this doesn’t always go to plan though and we just work around what we are doing that day. The one positive is that there are no set times things have to be done, as long as they get done they can take place at any time to fit around your day.
We are aware the older he gets the more medications and physio he will need. (Even if it does feel like we have a mini chemist set up already!)
He is generally really good with taking his medicines. He tends to not like the salts (they literally do taste like your swallowing the sea!) and his antibiotics don’t taste to good either! in the first few weeks he went into a mad panic every time he was given them but the more he has them the more used to them he is getting. (fingers crossed!)
As a parent of a child with CF you literally do have to try to learn everything from day one. As soon as a diagnosis is made there are no delays in starting treatments. No missing treatments. No days off – not even for Christmas and holidays. These treatments are a preventative and not a cure. We know that even if we put 100 percent into treatments every day Stanley will still pick up some infections a long the way – unfortunately there are just some things you can’t stop from happening. However hopefully this routine each day will keep him as well as he can be – and at the minute that is all we can wish for ❤️