Admission adventures.

Well we have recently just come out of the latest hospital admission for Cadel that was half expected but also a surprise.  We had a planned admission for Cadel that was a 24hour admission to do a top up of IV vitamins. Cadel has on previous admissions had this top up of IV vitamins so now it is almost a necessity to keep his vitamin levels up. It is typically a 20 hour infusion which means that a set volume of liquid vitamins is pumped into his blood stream over a 20 hour period. When we arrived at the hospital though we were given the news that they would like to keep Cadel admitted for a 10 day 'tune up'. For those not in the know about CF a 'tune up' is a term used to describe a course of IV antibiotics to help improve the patients chest hence a 'tune up'.  Cadel had been 16 weeks between admissions and had made it through winter, which totally amazed us and the Doctors but they wanted to just make sure his chest was back up to his baseline as it had dipped a little in the previous month. 

So off we set on the new adventure of this admission. It was tough keeping a relatively well, almost 3 year old occupied busy and happy in a room measuring about 4x4 metres square, as he was hooked up to different IV antibiotics, IV vitamins and feeding pumps. We managed and I think I kept my sanity but I just wanted to share with you how an admission for Cadel typically goes and what happens especially in the first few hours. 

We knew this admission was happening and on which day but we were unsure if Cadel had a bed available so we had to wait for the hospital to call us, this is how our day played out. Yes it is frustrating and tough and it is something we have done over 20 times. It doesn't get any easier, I think we just adapt quicker and take it all on board. 

9.30 We got the call that the CF Clinical Nurse Consultant ( CF CNC) had been to the hospital bed meeting ( a morning meeting everyday to discuss available beds in each ward) and they should have one today but unsure what time as they were waiting for the patient to leave.

11.30am We get another phone call from the CF CNC that the bed should be available by 2pm. 

1.15pm We pack up the car and head in down to the Hospital. 

2.10pm We arrive at the hospital, load up as much as we can and head on into admissions. 

2.30pm We finish all the paperwork at admissions and they send us on up to the ward. We are told on the ward that the room hasn't been cleaned yet so we will have to wait. We head on downstairs to just relax on the lawn. Luckily Cadel is alseep and misses all the drama! 

4pm we get the call from the ward that the room is cleaned and ready for us now so we head up. 

4.15pm a researcher from the Liver research team that Cadel is participating in has caught on that Cadel has been admitted, she asks if they can do this regular ultrasound for research purposes. 

4.30pm Scott arrives at the hospital and both Cadel and I are happy to see him as he is a big support for both of us during admissions. The Dr also arrives at this time and proceeds to tell us it is going to be a 10 day admission and discusses the medications etc. 

5pm Cadel's feeding tube becomes blocked and luckily his Dr is still on hand to help unblock it! Phew! 

7pm Cadel has his port needled. Cadel has had many admissions as you all know and his veins don't cope well with the IV lines so they decided over 12 months ago to give him a port-a-cath* this is a process that Cadel has to go through every 6 weeks as they need to flush it regularly to maintain the line and make sure it doesn't get blocked with clots. During admissions the needles are changed every 7 days to lessen the risk of infection. Although this happens regularly it is not a nice process as Scott and I have to hold Cadel down as the nurses insert the needle and take blood samples. Sometimes the port can be tricky and it may take a few attempts. Hard to explain to a toddler to just keep still when all he sees are needles coming at him. Scott had to leave not long after. We miss him and the big kids already. 

8pm Cadel is connected to his usual overnight feed. He also finally settles and goes to sleep. 

10pm The first of the antibiotics are finally started and I finally can settle down to get some rest myself. 

The next day and everyday after for the 10 day admission is different as they try and fit the meds in around his Physio times and letting us escape etc some points to share though are that at 

8am, 12pm and 3pm everyday is a Physio session. 

IV antibiotics are hooked up for periods lasting up to an hour at 6am, 8am, 1pm, 10pm and 12am. 

He has blood tests at 10am and 2pm on his second day of admission to make sure the levels of the antibiotics are not toxic but are enough to be effective. These blood tests are unable to be taken from the port as it is where the antibiotics are administered and may give a false reading. They typically do a finger prick and then squeeze the required about of blood into a test tube. Hard to watch and again hard to explain to a toddler. 

2pm on the second day the 20 hour infusion of IV Vitamins is hooked up, this now means he must remain connected up to the machines and therefore stay in the room. 

Hope this has given you all a quick insight into our admission. Maybe I will do a post on a typical 24 hours at home for Cadel. Well Cadel isn't so called ' typical' but you all know what I mean. 

K

*In medicine, a port (or portacath) is a small medical appliance that is installed beneath the skin. A catheter connects the port to a vein. Under the skin, the port has a septum through which drugs can be injected and blood samples can be drawn many times, usually with less discomfort for the patient than a more typical "needle stick".

Ports are used mostly to treat hematology and oncology patients, but recently ports have been adapted also for hemodialysis patients.

The port is usually inserted in the upper chest, just below the clavicle or collar bone, leaving the patient's hands free.

Sitting on the edge.....

With Cadel being so well at the moment and avoiding admissions. We as a family have been busy during the weekends just doing everyday things and some extraordinary things. 

Because of Cadel's health we haven't been able to visit my parents who live in a small coastal town 4 hours away for over 18 months. Although we have seen my parents as they have visited us, it's always nice to go back to your home town, even if it is to remind your self why you left in the first place. ( Bit cheeky I know!) 

Not being able to visit for so long has meant that I haven't seen my grandfather in many months also. With the use of some technology it has been great to see him on Skype but there is nothing like giving him a hug! 

I am happy to report that just this past weekend we made the trip down, with the clearance of Cadel's CF team. We had to pack a few extra items then the normal road trip but we made it down and really enjoyed ourselves.  It was great catching up with my grandfather and going back to my hometown. 

CF and Cadel's condition are never far from our mind even when we are enjoying ourselves on trips like this or just hanging out at home. Every step of the way, every where we go CF is always lurking in the shadows, waiting to give you that jolt back to the fact that we have a child with a limited life. 

I refer to it as sitting on the edge of a cliff, waiting and worrying that someone is going to knock you off. Staring down at the black hole that is the unknown. Its like a terrible waiting game. Yes Cadel has been well lately and has avoided an admission for 13 weeks now,  but the fact that the Dr's told us in January that he may only have months left is stuck on loop in my head. Those words have never left me and as each month passes, hubby and I high five but we never stop worrying about the next month.  So even when he is well we are concerned about what's around the corner.  We remain positive and hopeful that Cadel will be a statistic of a good type. We want him to have the story to tell at his wedding that at age two he was told he had months left to live and that he proved the Drs wrong. Oh and don't worry this Mum will invite those Drs to the party, not to gloat but to thank them for all their efforts and for never giving up. 

As a Mum of a child with a terminal illness I don't think that I will ever stop sitting on the edge of the cliff but I know that I can look around and see the family and friends who are waiting to grab me. My support group, my safety net, my harness, they make it possible for me to just function daily but I know that they also genuinely care about Cadel's health too, sometimes they even sit down beside me on the cliff. 

K

My wish for you....

As I sit waiting for my princess to do her Jazz and Ballet classes for the next two hours I think about how hard it is for girls to grow up these days. It has always been hard but I think society has made it even harder. So there are a few things that I wish I had of known when growing up and I thought I would share what I wish for my little chicken! 

****WARNING this blog will be full of positivity and lots of inspiring affirmations! *****

My wishes for you my chicken little:

❤ Always be yourself. Don't change who you are to fit in or make someone like you. If they don't like you for you or take you the way you are they aren't worth your time. 

❤ Appreciate your brothers. They are the ones that will always be there for you and stick up for you. You may need to look after them sometimes too! 

❤ Be kind to yourself. Don't get sucked into what the magazines say you should look like. Women are all different shapes and sizes and no one is perfect. Even models have something they don't like about themselves. Some people are tall some are short, some women have bigger breasts and some smaller. Love the body you got as its the only one you have. Also know that beauty comes from within and shines outside. 

❤ Be your own person. Like what you like and what you don't like. We are all different and if we all liked the same things it would be a very boring world. Don't give in to the pressures to do something just because someone else has the idea that doing that it can be cool or good for them. Make your decisions wisely and with much care. 

❤ Create your own path. Don't follow in the footsteps of others. Nothing good ever comes easily. If you work hard at something you can look back and be proud that you have achieved something special and know that you gave it your all and that no one else did it for you. 

❤ You are awesome. You are smart. You are beautiful. You are kind. You are unique. Have great self esteem and don't let anyone or anything strip it away. But don't be too proud to admit that you are only human. You can be strong but humble. 

❤ Don't be too proud to admit when you have made mistakes. Mistakes mean that you have tried and are living. Learn from your mistakes though and move on. Don't over analyse moments in time that can't be changed or taken back. 

❤ Girls can be nasty and cruel creatures if they want to be.  Don't be a 'mean' girl. Stay clear of these types of people in general. Surround yourself with positive people. 

❤ Choose your battles. Sometimes it's best to let the little things slide. Fight for the big things and be strong about what you believe in. 

❤ Boys, where do I begin! Some will become great friends others will float in and out of your life. The really special ones will love you for you and build you up and never tear you down. Love isn't all Fairytales and Prince Charming but, you will find your soulmate, maybe when you least expect it!  

❤ Be kind to your parents! When you become a parent yourself you will know how much we did, do and have done for you. 

❤ Be kind to everyone you meet as everyone has their own struggles and battles to deal with. 

❤ Be compassionate and treat others how you would want to be treated. 

❤ Smile, be you and love will shine from you and be returned to you! 

K

"Let me be, Mum"

So sometimes it's easy to forget that Cadel is also an ordinary 2 year old as well as a two year with chronic lung disease, liver disease and sufferers from CF. 

Last week I had a few reminders! 

Cadel had a massive tantrum. It wasn't about anything in particular but it was a terrible two tantrum because he didn't want to have a sleep. He was so, so tired and was just fighting it so much. I was holding him as he squirmed and squealed at me for the half hour that it took for him to calm down. I kept reminding myself this is normal, this is normal and then it came to me, I'm not holding him down fighting with him as they needle his port or take some blood instead I'm just dealing with 'normal' two year old behaviour (if there is such a thing as normal two year old behaviour) and I smiled. I know strange that I'm smiling as my nerves are frayed by the screaming and squirming but I was happy in the fact that Cadel was able to be a two year old for once. 

The same week Cadel was having some bad dreams ( probably explained the above tiredness) and just wanted Mum to sleep in his bed to know that I was there. Again I was grumpy that I was having interrupted sleep but then reminded that I wasn't getting up to an alarm on his high flow oxygen machine or because his overnight tube feed machine  was alarming. I was getting up to my son who just wanted his Mum. It's nice to have those moments. To be a Mum and I know that as a parent we all take on many roles but it feels so great to be Cadel's Mum and not Cadel's carer. 

Another moment was letting Cadel play in the park with his friends and brother and sister. It was fantastic and heart warming to see him playing without a care. I can't say that it was the same for me in this instance. It was a park that was covered in sand. 

I was panicking on the inside about any bugs that could be hiding in the sand that any other parent wouldn't have to worry about. Resting assured that I was probably just being over cautious. 

I was panicking about the bugs or viruses left behind on the rails of the stairs as he climbed the stairs for the slide. Reminding myself that I had hand sanitizer to wash his hands when he had finished playing. 

I was panicking about the sand that was now everywhere and now making its way into the area around his button. Upon inspection I found the sand had made its way into the delicate area around his button but I decided it was bath time when we got home to make sure it wouldn't cause any complications. 

On the outside I was smiling and enjoying the park play but inside I was screaming with anxiety. It's a battle to control that screaming and anxiety and keep it on the inside but it is important to do that so that Cadel can be a two year old and not always be a sick two year old. He needs to enjoy the small things as so do we as we watch with so much delight as he discovers all the goodness that this wonderful world has and not just the terrible sterile hospital environments. 

It's also important for his big sister and brother to see him play and have those memories and not just have memories of treatments and seeing Cadel unwell. 

Once more I found myself letting go a little bit more of those little anxiety demons but know as any parent knows you will always worry for your child regardless if they are well or unwell and knowing to learn what I can and can't control is the biggest lesson I could I ever take from all that life has thrown at us. 

K

Precious Little Fighter

It's currently 3.57am on a Sunday morning and I just can't sleep. I was laying there thinking about a friend of mine and all that she and her family are going through. 

I've known this friend ever since she was born as our families grew up together. Her and her sisters are like family to us and she is going through a really tough time at the moment and I am constantly thinking about her but have no idea how to help her. 

About a week ago her second daughter was born at just 25 weeks into her pregnancy. I have no experience whatsoever with a premmie baby and cannot even begin to try and understand what pain and heartache she is going through. 

Yes Cadel has health issues and has his own diagnosis that scares us everyday and makes my heartbreak every time I look at him playing and giggling with his brother and sister but at least I know (well sort of) what's going on. 

My friend has been sent home already from the hospital, while her baby fights away in the NICU, how hard would that be to leave your tiny little baby who needs so much help. I know that she is in the best of care but as a mother you just want to fix things and know what's going on, that's why I'm lucky to be able to stay with Cadel when he is admitted and we are able to always able to know what's going on ( well, most of the time!) 

To not even know what sort of effect if any the early birth will have on this precious pink bundle must feel unfair and scary. To try and explain everything about what's going on to her older daughter who is only young would be tough too. To function as a person and as a mother in the real world but making the time to sit and wish to hold your newborn, another tough task. 

I'm always thinking of you my friend and wish there were something I could do to make it all better. 

I would like my friend to know that I wish her to have the power of advancing time. I wish we could fast forward and they could be home enjoying their new little baby and not have to sit and listen and watch those blinking numbers on the monitors that tower over the precious little body. I also wish you my friend strength. You will need it I'm sure as you watch your little one fight and to guide you through tough times ahead. Also if I have learnt anything from Cadel's health issues it is to lean on the people around you. You can only be strong for so long. Don't see it as a weakness but more as a way to regather and draw more strength. 

For the little one I wish health, healing and time. I wish her the best medical team to help her grow big and strong and be the best person she can be. I also wish her strength. Strength to fight. Fight to be home and to get to know her big sister, her Mum and Dad and her Aunties, Uncles cousins and Grandparents. 

Fight and be strong little one and soon we will meet you. 

K

Dreaming and Making Memories.

Well we have just had a long weekend and it was a rainy and dreary grey weekend but we still made the most of it. 

The first couple of days we spent snuggled up in bed watching DVD's and the last we we went for a scenic drive and had a picnic ( under cover of course). 

The day spent watching DVD's and snuggling is just as important as the scenic drive. We just hung out all together at home caught up in our own little world with no cares and just soaked in the family time. 

We need to take this moments to make special family memories and I remember as a kid going on road trips close to home and exploring great little towns. The kids were so great and really loved being away from the screens of technology as did hubby and I. We took our time and explored the many lookouts in the rain forest and read the educating signs strategically placed around the place. Although it was still drizzling we made the most of it. 

It was great finding a scenic lookout ( although there was so much fog we really couldn't see whatever it was we were supposed to see)  where we enjoyed our hot chocolate, brownies and listened to the bell birds singing. We then drove on checking out little secluded spots and soaking in all the fresh air. We found a great covered area to have our picnic. 

As much as it was great to refresh our souls (I know, bloody Hippy Dippy saying!) it is important to make these memories. Sometimes we forget about Cadel's illness and feel just like a so called 'average' family and I hope the kids cherish those moments that hubby and I work so hard at making for them. We took the obligatory selfie photos  and family photos and tried to take some 'arty' shots of the beautiful rain forest. It was great to have a day where we weren't irritating each other, there was no yelling and screaming at each other, no bickering and there was plenty of 

smiles, giggles and happy sounds. 

I think the kids enjoyed it as much as we did and hopefully they lock it away in their memory bank. Hubby and I were checking out the cottages for sale, dreaming about buying a little run down cottage to renovate into an open one room little get away with great views, a cosy fire and no TV or phone reception where we can escape the real world and enjoy our family time. Wouldn't it be great. One little cottage in the hills to escape to in winter and then another by the beach with just the basics to enjoy the warmer months. 

Oh well I can dream anyway, have to buy some lotto tickets and cross our fingers and toes to help this dream come true. But that is what life is all about making plans and dreaming and working at those dreams to make them happen. 

K

Rudely Interrupted!

Scott and I since Cadel's diagnosis have always said that CF would have to fit into our lives and as much as we practically can we don't let it interfere with our day to day living. 

The past week we have had two rude interruptions from CF and it all became too much. 

I had organised to treat some lovely friends to a special catered for high tea. It was a way to say thank you from Scott and I to friends who are forever helping us out especially when Cadel is admitted.  I organised it all from the hospital via emails and we sorted out a date that suited everyone ( not always an easy task). I kept the fact that it was catered for and a high tea a secret, well that was until CF interrupted! 

Two of the three friends kids had been sick so being good friends (one having a CF child herself too) and knowing how devastating Cadel getting sick can be said they couldn't make the afternoon tea. Well I have to say I immediately started crying, not just tears but I had my ugly cry going.  You know the one I'm talking about the one where you just have no control over it and you know that it doesn't look attractive! Definitely not the delicate cry you see in the movies! There was also the obligatory CF sucks with loads of swearing before and after those words. 

After much messaging back and forth, a phone call, spoiling my secret plans by telling the girls and a lovely, fantastic husband who cleaned up the yard in record time, we sorted it all out, had the afternoon tea in an outdoor area with no contact and we got to say thank you. It was a lovely afternoon beside the pool, waited on with lovely food and great company and we got to feel lady like with our tea cups and cucumber sandwiches, the conversation may have not all been ladylike though, mostly it was oh hell, who am I kidding that's what friends are for! 

The second interruption occurred the same day! Probably why my emotions were so high! Lorelei loves to write stories and draw pictures so I wasn't surprised when she came to me with a book she had written about our family. The words literally took the wind out of me and scared me for things to come. As most of you know Cadel has been really unwell over his life time and doesn't have the best outlook for the future. For those that don't know in September 2012 the Drs told us that Cadel is unlikely to make it to ten but then after more infections and more interventions the Drs said in January 2013 that it now may only be months ( really tough to actually put that into black and white, the first time I've done it!) Scott and I are forever hopeful that this is not Cadel's fate and we have never mentioned this to Lorelei and Xavier as its just not relevant to them right now but we will discuss it when the appropriate time arises. 

So when Lorelei came to me with her story that read these words I was fearful and completely not ready. 

" Our Family. Once upon a time there was a little boy who had CF and he was sicker then anyone. One day Cadel went to hospital because he was sick. He still gets sick when he has CF. The End. "

We make an effort to explain to the kids that all CF sufferers are different and not all are as sick as Cadel and they have met other CF kids and even met Peebo and Dagwood, the performing clown brothers who both have CF. In their world though Cadel is the sickest person they know. I know the kids know and feel like there is more than what we let on and the day that we have to explain the full diagnosis of CF scares me let alone the conversation about Cadel's diagnosis. 

So as much as daily life carries on around us and we get back into our family routines CF is always lurking in the back of our lives and waiting to rudely interrupt. BUT the way we react to these interruptions is what is important and we are forever in the good fight against the evil that is CF and even little small wins like still being able to thank our friends are wins against CF nonetheless. One day we will have a big win and Cadel will prove the Drs wrong. 

K