My new world - you don't know what you don't know

Two years ago I didn't know what Cystic fibrosis was. I recall studying it briefly in my Early Childhood Teaching degree (diversities subject) but that's it. I could recall it was genetic, but my knowledge was no further than that. I know of two people who's children had / have CF but it didn't mean a lot to me to be honest. I knew they had a life threatening condition, but that was all.

But when my world came crashing down at James' diagnoses my world quickly became consumed with CF.

Now my constant daily thoughts surround Cystic Fibrosis and sometimes I feel ever so consumed. Words I had never heard of my auto correct knows to correct or predict. Psuedomonas, d508, culture, sputum, bronchoscope, mutations, Toby, and many many more.

I now live and breath avoiding dangers like bacterias and viral infections and encouraging high fat foods and Physio. 

My Facebook feed is chockers of posts from CF forums, other parents updates and pages. My daily routine is worked around high fat meals, Physio and time to plan more meals / supps and to research what else can I do. There always has to be more I can do right? There is certainly more to learn. This disease is vast, complex and different for everybody. 

Who knew all this existed? There must be lots of other worlds co existing at this very moment. Families who are inundated and consumed with other illness' and conditions. I know two years ago my feed was thermomix, early childhood, and my social life. It just shows how in a New York minute everything can change. 

I love Thieves

What is thieves?

Thieves is an essential oil blend made by Young Living. It was created based on research about four thieves in France who covered themselves with cloves, rosemary, and other aromatics while robbing plague victims.  It is highly effective in supporting the immune system and good health.

Thieves Oil is documented to be highly anti-infectious, antiviral, antibacterial, and antiseptic. 

Young Living’s Thieves Oil has been scientifically proven to kill deadly germs. Research from Weber State University in Utah has shown that it has a 99.96 percent kill rate against airborne bacteria. It was proven to be highly anti-infectious, antiviral, antibacterial, and antiseptic. Including Psuedomonas!! 

*Research shows that Young Livings Thieves Oil effectively interrupts the life cycle of bacteria and also interferes with the ability of viruses to replicate. Studies also confirmed that most viruses and bacteria cannot live in the presence of many essential oils, including two of the oils found in the Thieves Essential Oil Blend, cinnamon and clove.

It's ingredients include Clove† (Syzygium aromaticum), lemon† (Citrus limon), cinnamon† (Cinnamomum verum), Eucalyptus radiata† and rosemary† (Rosmarinus officinalis CT 1,8 cineol).

You could make your own, but I buy for young living as they guarantee seed to seel, therapeutic grade, ingestable, bio dynamic oils. 

https://static.youngliving.com/en-AU/PDFS/lit-thieves_booklet.pdf

I use theives for everything! Bottom of the feet for immunity, diffuse to kill bugs at home and in the car, orally if a sore throat appears, in the bath, cleaning, chest rub.... My list is endless! 

Here are some links 

101 uses for thieves

http://www.younglivingsuccess.com/2009/02/101-uses-for-thieves-oil.html

Recipe for thieves 

http://www.natural-aromatherapy-benefits.com/thievesoilrecipe.html

Ingesting 

http://drjoanbarice.com/ingesting-essential-oils/

If you want to purchase you can from me direct, or call / web young living and order with my referral id1425358.

However if you are interested in using oils daily like our house hold you may want to consider joining as a distributor for 24% discount! You don't need to sell and only need to make 1 purchase annually... 

Great essential oil resources 

Aromaweb

http://www.aromaweb.com/essentialoils/essentialoilsguide.asp

User guide for EO's

http://ylwebsite.com/uploads/essential-oils-user-guide.pdf

50 uses vas recipes 

http://thecoconutmama.com/2013/10/50-uses-for-essential-oils/

Search for apps too

Xx

My first tune up

I'm 15 months old and I have cultured pseudomomas aeruginosa (PA). 

I often had my morning iv's during breakfast. The morning run was from around 6am until 8.45am ish. Mum was dying for a coffee! The food wasn't as good as home! 

I had 3 doses of tementin a day and a single dose of tobramycon. These are hard core antibiotics aimed to kill negative gram bacteria like pseudomonas. 

I enjoyed the view of cars, trucks, bikes, planes and helicopters. It got pretty hard not to run around with iv's hooked up (that's how I pulled the first line and had to go back under anesthetic). 

I got in some reading and even borrowed from the library.  I just love trucks, bikes, beetles, butterfly's, dogs (macs), balloons, and balls. 

Sometimes it got boring as mum was cleaning my meal mess and I couldn't go outside so I got into what ever I could. 

I liked to nap during my afternoon iv's. I took my favourite things from home. My iv's were 6-9am ish, 2-3 and 10-11pm ish. I also had multiple blood tests, visits from drs, dietician, social worker and Physio twice a day. Plus my normal toddler routine!!! 

I was lucky enough to have a few walks. Sanastian visited me this day.

I loved it!

I constantly had my obs done to check my temp, heart rate and pulse. I also had many many blood tests (checking my tobra levels 2 and 6 hours after my iv's) and have jab marks all over my hands and feet. 

One of the days I was lucky enough to be there for the B105 Christmas appeal and saw a few celebrities (mums not sure who they were) and the best thing ever a big Macc Truck!!!! 

I was a real trooper and endured lots of different people poking and proding me.

I was happy to go home to my trucks and was so thankful Eve lent me her Monkey as the adult bum belt the hospital issued was a tad big. 

I will stay hooked up to my monkey until Sunday and then start 4 weeks on nebulised antibiotics. A nurse visits me daily at home while on iv's. 

Packing for tune ups

Ok so you're going in for a tune up! 

I can speak for my experience in RCH Brisbane in the Robertson Ward. I found it super hard to get info for James' first stay so I've complied this to hopefully help others. Please ask me anything ♥️

Cleaning

Gorgeous Jess in Adelaide sent me a great list of things to clean on arrival. If there are 2 of you one adult go in while the other stays with the bub / child and anti bac the shit out of the room! We were told to pay attention to the following : fridge, light switches, door handles, remotes, taps, cupboards (in and out) and especially the cot if using one (ours had a lot of blood all over it!). Jess was right these areas all needed extra attention. We don't use chemicals at home but when we get admitted we do spray the room with glen 20 and come back in 30 mins! Especially the fridge, sinks and bathrooms. 

For bubs

Bibs are available - grab a whole heap. 

Grag a high chair and after giving it a good clean and keep it in your room. 

There is a CF kitchen with sink, fridge, freezer and cooking facilities. Although a CF child can not enter the kitchen (or loiter in the corridor) so it can tricky to actually get in there to cook or even reheat if you are on your own. This kitchen also has additional snacks for CF families like milks, cereals, saos, spreads, bread, shakes and milo. 

There is linen for the patient and staying parent so help yourself to the trolleys. Towels, sheets, pillows, blankets etc. So you only need to bring special pillows etc if you or child need. 

Food 

Food is pretty bad. If you're like me and in a health fund some subsidise meals for parents. Ie Bupa is about $30 a day. So keep receipts. Breastfeeding mums however do get fed meals for free. The meals though are pretty shocking and it's potato potato potato (fried, chips, mash, hash browns, gems etc). So ask visitors to bring meals or healthy snacks. Our first admission we had time to prepare so I and friends cooked healthy mum and bub meals to heat in there. Dad brought more in every few days.

The cafés are not the greatest either. We took our own bread, butter etc. Coffee!!! The coffee shop in the wall at the enterance of RCH opens 630 weekdays and over the weekend or public holidays the royal women's cafe opens at 700. Just have to walk over. The cafe at Rch only opens over lunch on weekends so there's not a lot for parents. 

Local takeaways do deliver to the hospital though and once you get antibiotic levels right you can leave to go to local supermarket or Resturant.

Other facilities 

There is a washer and dryer. One in parents lounge and another just for CF families on the ward. 

There is a parents lounge (no kids allowed) and Internet in the lounge.

Entertainment 

Take your child's favourite things to do to keep them occupied. Something's there are long waits. We take books and toys. iPads are great for us to use as a distraction during blood tests and dressing changes. 

Cf Qld also provided a boredom buster bag, but not age appropriate for a toddler so don't rely on this. 

There is a tv at each bed which is free in the Rch. 

We used an iPad for needles, dressing changes and iv's! Distraction is the key. 

Speak up 

Don't be afraid to speak up. Question if staff or visitors have washed hands. The nurses often do it before entering, but kitchen staff open and close door often without so just watch for this. Also watch  what's being administered. We had issues with a double dose of hepron for a week! Also learn the ropes vas don't reply on nurses to keep you to schedule. For the first few days antibiotic levels may be tested to check if they are right (weight dose etc) these are 2 and then 2 hours after the dose began. Sometimes there are agency staff who are not experienced with Toby iv's or enzymes so keep on top of everything :-)

This is our Packing list

Clothing (some warm as it get cold on the ward)

Shoes

Hats

Toiletries

Cleaning wipes / glen 20 etc

Toys or activities 

Books for you to read / iPad 

Air cleaner / diffuser 

Medicine 

Enzymes 

Apple purée

Vitamins 

Supps 

Oils

Snacks 

Chargers 

Sleeping comforter 

Sippy cup

Spoons 

Few containers / plastic plates 

Pram / ergo baby

Nappies 

Wipes 

Chest rub

Backpack for iv's to come home 

Water bottle 

Wallet 

Phone 

Try bring home clear bags and extra tubey grip as you will need to keep iv pack and dressing clean and dry. If you coming home on iv's grab a small backpack lesh and remove the lesh. It's the perfect size for iv bottle. Thanks for that tip and lend Megan and Eve.

Another great vid. 

http://cfsmart.org/films/

Xx

Umm hospital - to get sick people healthy right?

Why are you called a health professional in hospitals? As this just may be one of the unhealthiest places there are. 

Bacteria, sick people, even sicker people with their smokes and iv's, doctors and staff feeding their faces coke, chips and deep fried foods from the very unhealthy caff (and having a fag around the corner).

Seriously makes me sick. James requires a high fat diet. To me that is NOT chips and gravy! The food here ( Brisbane's RCH) is horrid for sick kids and maybe the limited frozen vegetables are actually the healthiest option. Yesterday lunch was chicken nuggets and chips. No veg at all. Other meals have been mash, chips, potatoes gems and a meat product (sausage, patty (or what resembles these) or chicken strip). Followed by some sort of artificial dairy with colours and flavours - custards, cakes or mouses. Snacks are msg packed potato chips, shape biccies, biscuits and yogurts. I asked for plain and here that equates to vanilla. 

They want us to feed James shakes made with gmo corn syrups and chemicals that I would never want anyone to consume. I question how can this be beneficial to the immune system .. To stay healthy? To rebuild sick bodies? To give kids (and adults) the best start to regaining health and overcoming illness? Hhmmmm 

Ten years ago a CF diet was recommended to be low fat and high protein apparently. So clearly there is learning and research to still be done. No one talks about high fat being nuts, oils, olives, coconut oil / cream and good quality dairy. Instead the hospital recommend CF diet outlined in the parents' manual is deep fried, take away, marg, sausage rolls, hot dogs etc. Even Cystic Fibrosis Qld sent as lunch vouchers to McDonalds and KFC. I feel like I'm constantly smashing my head against the wall. I need to contact Jamie!

We have pre prepared as much as we can food wise. And I'm loaded with raw nut bars, supplements, and home made high fat organic meals. We don't eat 100% organic as who can afford it or even source it? But meat is our main concern of avoiding toxins (this kid is costing us a fortune) especially in here. 

We have caved under pressure a little though during our admission and allowed James a few things we would generally cringe over and do everything to avoid. But when being threatened feeding tubes we thought a bit of choc custard and crisps (no msg) don't sound the worse thing ever. It's such a hard line to draw in the sand and a constant head fuck! The variables of a high fat, high salt, nutritious, non toxic, enzyme dosing and a fussy toddler are not fun. Just one aspect of CF that is ever so consuming. Giving him a little of this shit especially in front of the dieticians also get them off my fucking case. 

We saw Dr Lim before coming in and he has suggested James' diet change to no dairy (except yogurt and maybe butter), sugar or wheat. This will help avoid inflammation and mucus. As the bugs can't sent up camp in his lungs if the mucus is minimal. So this will be our new game plan on the other side! 

First tune up. Day one

Well at least the anxiety of anticipation is over! James has his bronch which found lots of mucus. They also inserted a PIC line which is easier than a canular to give antibiotics intravenously. They struggled with the PIC line and it took 2 hours and he's covered in holes where they attempted It. They start the iv's tonight at 10.

He came through it well though and after the initial woozy shock he's back to his normal happy social talkative self. Hoping that he tolerates the Iv's too. They are two different kinds of hard core antibiotics to kill gram negative bacterias like pseudomonas. 

As parents to a child with CF we went into combat to make sure everything was clean. As lovely Jess sent me a list of tips that she does to stay clean on her tune ups. And Jess was spot on - the cupboards and fridge may have been missed! And as for the cot.. Well there was blood on it.. Yup blood! Quite a bit down the railings! So I cleaned this room like a crazy nut! But it's a no brainier you just gotta! 

So all in all we are relieved this day is over. We bought James a Medical toy kit and that's worked a treat. 

❤️❤️

In between worlds

Sometimes it's very very tricky being a CF mamma. I feel like I'm stuck between two worlds. The normal mamma world where kids are 'normal' without health complications and the 'sick mamma world' where kids have daily ongoing struggles with health. 

James' health considering he has a life threatening illness is good! It's better than good! He's not cultured anything, had no hospital admissions, no infections, not even a bad cold! Yet the daily constant worry and mindfulness of CF and all the considerations including bacteria & hygeine (which would have a subsection of 1000's of worries), dietary requirements, salt, Physio, supps, and the learning of this desease is emotionally and physically exhausting. 

The isolation itself is a killer. You can't be around another person with CF (yes there are siblings both with CF but this is far from ideal). Although there is amazing support from other mammas I struggle not having one on one catch ups and play dates with people that totally get it. CF mammas I would now call good friends yet have never met most of them face to face. I am a very social person. A social person with almost no family support. I'd love to jump on a train and visit my work mates - but are the sick, people coughing in the lifts or home many smokers will we have to walk pass? I'd love to go the shopping centres look at Xmas presents, buy a few things for the new house, but will people be coughing in air conditioning with no ventilation? Who touched the trolleys before me? And don't even start me on strangers who think it's ok to touch babies! All health risks for James. Sounds exhausting doesn't it! 

Some people think myself and other CF parents are over the top and too cautious, but when your child has a life expectancy of 38 and the mean CF age is in the 20's what would you do to keep your babes little lungs are healthy as possible? 

My gorgeous friends who's children do not have CF or other diversities can't ever grasp the complexity and exhaustion being a CF parent brings. Although their friendship and considerations for James health is beyond appreciative. 

With my CF mamma friends I feel guilty that James 'isn't that sick' (no he does not have a milder form just lucky at this point). He's doing so much better than most and how can I possibly understand the constant complications? So I feel bad and unworthy of the support as it could be so much worse. 

So that's me. My first blog entry. As I sit here feeling panicked listening to a wet cough praying and manifesting its viral and not bacterial. Feeling proud for all I've achieved as James' Mum but questioning am I doing enough?