Letter Q ( A to Z of CF 2014)

Q is a hard one to write as there are not many Q words but nonetheless here are a few and how they relate to Cadel and our family with in relation to his CF. 

Quit I wish that we could all just quit the disease that affects our life. I want to quit the treatments, the medications because I just want the damn disease to bugger off and disappear and act like we have never ever met before. 

Questions we are asked a lot of questions by a lot of people. Concerned family, friends, medical staff and sometimes the questions are hard to answer as we just don't know the answer. We are sometimes the ones asking the hard questions too, we ask them of family, friends and medical staff and the answers aren't always the ones we want or need to hear. 

Quiet, it's good to have some quiet time and just relax and let the mind go blank and disconnect from the world. It's sometimes the moment when the best ideas or memories are made. 

K

Letter P ( A to Z of CF 2014)

 P is for Portal Hypertension. 

Cadel was diagnosed with Portal Hypertension in his liver late last year and it is all relatively new to us so here is a definition I have sourced to help you understand but first I must remind you that Cadel was diagnosed with CF related liver disease. 

**taken from childrenshospital.org

Obstruction of the portal vein – caused primarily by clots in or narrowing of the vein before it reaches the liver, cirrhosis, or high pressure in the veins that drain the liver into the heart – can cause the pressure in the vein to build up, much as blocking the end of a hose causes the pressure in the hose to climb. Increased portal vein pressure – known medically as portal hypertension – causes blood to back up in the organs that send blood to the liver. The body tries to relieve the pressure by generating new blood vessels that bypass the blockage, but such vessels are often weak and twisted, and tend to bleed easily. These vessels, called varices, may also bypass the liver itself, allowing toxins and nutrients to travel through the bloodstream unprocessed.**
 

So to see what is going on with Cadel's portal hypertension he will undergo an endoscopy to see the extent of the portal hypertension and if there are any bleeds they will be banded to cut that supply of blood off. This will have to monitored closely and is just another part of Cadel's unique condition that makes him special to not just us but the Dr's that treat him too!!

K

Letter O ( A to Z of CF 2014)

O is for Omeprazole

This is a medicine to help Cadel fight off his GORD or Gastro-oesophageal reflux disease, really it is a big word for reflux or heartburn. It may sound simple and not harmful but in Cadel's case it was making him really unwell and we think causing more then usual lung infections. What was happening was the reflux would make him vomit and then he would aspirate or breathe in part of that vomit into his lungs causing a yucky environment for nasty bugs to grow. 

So Cadel was put on Omeprazole as it helps to settle the stomach. 

When that didn't completely stop the reflux Drs performed a procedure called a Fundoplication, this is where part of the stomach is wrapped around the entrance to the stomach so as to stop the reflux. It wasn't an easy process for the little man because for weeks he was unable even to drink water for fear of aspiration so had to have IV nutrition called TPN. Even after the procedure was done the process of going from fluids, to purees to solid foods took a while. 

Thanks though to the Drs for doing this procedure we now think that this is why he has kept so well. He still takes the Omeprazole though to keep his stomach settled and it also helps to activate the enzymes that he takes to absorb his food, sometimes the side effects pay off! 

K

Picture of fundoplication. 

Letter N ( A to Z of CF 2014)

N stands for network. 

We are lucky to have a great network of friends who are very supportive. We like to think of them as being on our team in this fight. 

There are our 'salty' friends who feel like family as they are also CF parents and are more sympathetic then others as they feel our pain and share our torture. We make time for each other and help each other, giving and sharing and asking for advice, tips and sometimes just a shoulder to lean on. 

Hubby and I are lucky that we have made a great relationship with some very lovely friends who also share our pain, torture and wins. They are always there for us at the drop at a hat and we know that we can rely on them to provide some wise words of wisdom and be a sounding board. 

It's very important to have this network as we need them to prop us up from time to time when things rough. We thank our team, as much as we can but we feel it's never enough for all that they do for us.  

K

Letter M ( A to Z of CF 2014)

M is for Mum! 

I asked Lorelei what she thought letter M stood for in relation to CF and she said after some consideration 'Mum'.

I have to agree I thought the same thing. I am a registered carer for Cadel but I am his mum first and foremost, as I am also Mum to Lorelei and Xavier. 

There are some days that I wish I was only a Mum and not a carer, having to do treatments or medications or medical procedures in my own home, like reinserting feeding tubes, but I also need to be a carer to make sure I continue being Cadel's Mum. 

I have to remind my self though that I am a Mum and I'm just doing whatever I can for my child like any other caring Mum would do. 

I am a Mum and I love being a Mum. Some of the last words my grandmother said to me was that she always knew I would be a great Mum and that it was who I was supposed to be. Those words always meant so much that she can see what I feel and that I had made her proud. 

K

Letter L ( A to Z of CF 2014)

L is for laughter. The saying laughter is the best medicine rings true with our family. 

There are many times when having a giggle or laugh has completely turned a situation at the hospital around. 

We try and surround ourselves with very positive people, who share our sense of humour so that we can all laugh and have a great time. 

Apart from hearing the word Mum ( well sometimes it gets annoying, let's be honest) from my kids, especially when Cadel calls me Mumma or Ma, their laughter is the best sound in the world. 

I love hearing my kids laugh and when they are all laughing together it's even better. 

Who can be mad, sad, angry, upset, down, or any thing else then happy when you hear the giggle and gaggle of children. It nourishes the soul and I believe that means a happy and healthier life. Laughter may not cure any disease but it makes things bearable to laugh at your situation sometimes. 

K

Letter K ( A to Z of CF 2014)

K is for keeping it real. This blog is a great place for me to tell it like it is. Sometimes it's easy to put up a front and pretend that everything is ok and behind close doors crumble into a mess. This blog space allows you, friends, family or complete strangers in on our journey in life and with CF. 

I try to be really honest in this space and I think that has helped me deal with a lot of things easier as I can write down exactly how I'm feeling instead of just letting it fester. It also may help others going through the same thing to now that what they are feeling is ok and someone else feels the same. 

So thanks for letting me vent sometimes and for putting up with me spilling out my feelings and I hope that it benefits, you, me and my family. 

K