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?