The second most challenging thing I've found with Oli having CF is the medications. The first is the physiotherapy but that's a post for another day. At this point in time Oli's medications really fall into the prophylactic category - meaning he takes them to keep him well , not to treat anything so to speak. Bringing home a new baby is challenging at the best of times let alone having to administer a number of medications throughout the day. To be honest I think we struggled for about 6 months or so to get a routine with the meds. There were alot of occasions when we have got into bed and said shit! forgot to give his antibiotic AGAIN! But things like that are just a part of life. In fact a few days ago I didn't give Oli a single med all day! Minus his creon with food obviously. You just have to laugh and say... better luck tomorrow! This was an extreme circumstance of course when I had been up half the night!
When Oli started solids I found this a turning point for getting in a routine with medications and sticking to it. I had to put my nurses hat on and think about what would work and what times would suit our little family. Having a strict routine is so much easier than thinking I'll just do it later etc. Below is our routine.
AM - Antibiotics & Salt
Lunch - Probiotics
PM - Antibiotics & Vitamin
Creon with all foods minus fruits - no fat!
Oli is on prophylactic antibiotics twice a day to ensure he doesn't catch common bugs that babies are susceptible to. At first I felt like this went a little against my grain. I cringe at the thought of long term antibiotic use and the GI system not to mention other harsh effects. After thinking about it for a short amount of time I came to peace with the fact I would much rather heal Oli's gut through probiotics, foods etc during and after the antibiotic use rather than risk him as a tiny baby contracting some kind of horrible bug and him becoming really sick. I honestly believe that he would have caught a number of bugs during his first year without these AB's. Ian and I both share the belief that Ol shouldn't miss out on things because of his CF. I take him to the pool, let him play outside in the grass and to mums group with reassurance that he is on the AB's which provide some extra protection.
Oli is also part of a research study in which he takes Azithromycin three times per week. The study is looking into the anti-inflammatory effects of the drug on the lungs. I also use to get weekly phone calls asking if Ol had any symptoms as a part of the study. If he did have a runny nose we would have to take a nasal swab and freeze it until we went to the hospital next. Hehe, it was quite funny when my 4 year old nephew would come to visit and try to get into the frozen swabs thinking they were icy poles! He would laugh at me when I told him it was stuff from Oli's nose in there! Once again we thought long and hard about Oli being in a research study and more medications in particular antibiotics in his body. At this point in time I feel that being a part of a study helps get closer to finding a cure for CF. For Oli, for our future kids and all the other babies out there. Someone once said to me "Azithromycin! What dosage?! That's such a strong antibiotic I wouldn't be giving it to my baby!" At the time I laughed it off -as I usually do when I'm in shock at people being complete bloody wankers! Alas I no longer associate with such small minded, rude people! When you are in my position as a mum of a baby with a chronic illness, feel free to chat to me about things like this. Until then, hold your tongue.
It's a known fact that midwives use to lick babies to see if they tasted salty to diagnose CF. When Oli was born and I could get my tongue close enough to him, I gave him a lick yep! He sure was salty! People with CF don't sweat more than everyone else. The difference is they lose more salt and potassium through their sweat. The sweat glands are also clogged by mucus resulting in people with CF loosing two to five times more salt in their sweat. This is why we give Oli salt daily and have to keep a close eye on him in the summer to ensure he is drinking lots and not becoming dehydrated. This is something we struggle with because Oli takes a salt solution which is sickly sweet & salty and tastes disgusting! Getting a baby to drink something they don't want is extremely difficult especially when it tastes horrible! Oli pushes it away and says No! No! I try to give it to him in a little medicine cup with a teat on top so he is drinking it 'himself' this seems to help but any tips would be so appreciated! We have tried in juice, milk or food but he tastes it straight away! It was so much easier before he started solids to get him to take his meds. Now that his taste buds are a little more mature and he's had a variety of foods he knows his meds aren't the most delicious thing on the menu!
I give probiotics because of the many doses of AB's that Oli has throughout the day. After being a part of a few CF groups and doing my own research I think that probiotics are a must have for Oli. When I spoke to the gastro specialist about giving Ol probiotics he said there was little evidence to prove the effectiveness or quality of probiotics. He also mentioned that there was no regulatory body for probiotics because they aren't a medication per se...so you really don't know whats in them. What he did say was that there is definitely no harm in giving them. So I do!
Oli is on a vitamin because his body has difficulties absorbing the nutrients from foods. This extra boost of vitamins and minerals is an essential part of his regime! I sprinkle it on top of yoghurt or through his foods. I hated it when he was a newborn because I had to mix it with apple sauce and it gets all gritty and tastes like shit. All of his beautiful little suits are stained bright orange with the stuff because he use to spit it everywhere! No amount of soaking will get those bloody stains out.
A tip that I found really helpful in the early days was from my Mum. After bringing home literally shopping bags full of 3 months supply of meds she helped me clear out a huge drawer in my walk in robe to store them. Mum made a great point, you don't want these in your face, out in your living area where people come in and see them and ask questions etc. CF and all these meds are NOT our entire life! This really helped me but also showed me being organised is key. Having a dedicated space to store meds and keep everything in order is imperative. We need to know how much stock we have, when we are running low etc. Hehe sounds like we are running a pharmacy! But its true! You cannot mess around and be lazy with these kinds of things. Oli's little life depends on us being responsible and taking his med regime seriously. So our storage is in our room - in a drawer that can be locked when little toddler hands come exploring. I have a smaller basket in the kitchen cupboard with the meds I'm using right now and in my fridge one of the cheese compartments is dedicated purely to Oli's meds. Syringes are another thing, they take up so much room! I find the hospital pharmacy are really quite tight when it comes to giving out syringes. They say to wash them and reuse them but I dont like that idea because there is always a little bit of water left behind. I throw them and just tell them I always need new ones! That's me these days! Living on the edge!
We have found pharmacy perhaps one of the most stressful factors in our whole experience! CF clinics in our hospital run on Wednesday afternoons. This caters for a lot of cf patients, all needing three month supply of medications. This means the wait time can be up to THREE hours! We just drop our scripts and run these days. I return a few days later and pick up the meds, it's simply not worth the stress of waiting. As you know, I always try to see the positives! A three hour wait in a tiny hospital pharmacy with a baby is a negative. Going into Subi or Northbridge for breakfast or lunch and popping into the pharmacy a few days later for five minutes to pick up meds - relaxing!!
Since creating a routine Oli's meds don't worry me at all. By making small steps to get organised, I no longer have to think about it. It's just like brushing my teeth. Something we just do! I hope this helps someone out there one day. I know how overwhelming it can be. When you are in the midst of caring for a new baby and dealing with a diagnosis of CF, the last thing you feel like thinking about is medications. Feel free to share your ideas, experiences, advice etc! I would love to hear from you all! Xx