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