Tag Archive | hospital

Our CF journey so far…

On the 16th May, it will be seven years since our family was completed. On the 12th June, it will be seven years since our family member’s lives were irreversibly changed by two little letters.

Cam funny

Cam- our little joker!

The last seven years has had its up’s and down’s. Cameron is a vivacious little boy who lives his life to the fullest. He doesn’t walk, he runs through life (literally and figuratively!) If there is a joke to be found…Cam will find it! His diagnosis has not dragged him down in the slightest.

But that doesn’t mean there haven’t been hard times.

In the last seven years, Cam has been admitted in to hospital four times. There was one when he was diagnosed, sick with double pneumonia and underweight due to malabsorption.

The second time was when he was two years old. A bronchoscopy at annual review that year showed he was growing the dreaded super-bug Pseudomonas in his lungs, which is an instant minimum two-week admission into hospital for intravenous antibiotics.

Cam sick

Hospital is never fun 😦

The third time was unrelated to his cystic fibrosis. He had severe tonsillitis and his throat closed over. It was a scary 24 hours! We were more worried about that than anything he had gone through with his CF by that point.

The fourth time, he was five years old, and another routine bronchoscopy showed Pseudomonas again, which resulted in a gruelling two weeks in hospital and another week of treatment at home. We were all exhausted by the end, and it was a rather traumatic experience for Cam which resulted in a slight fear of needles.

Over the years, he has also had a staph infection twice. The first time, we discovered he was allergic to one of the antibiotics they used to treat it.

Cam nebuliser

He hates nebulizer treatments

He currently has about 30-35 tablets a day to keep him healthy. This includes Creon tablets (which help him digest his food), salt tablets (as salt loss is massive with CF-ers), a multivitamin, Vitamin D tablets (to ward off osteoporosis, which is high risk in CF-ers) and antibiotics to prevent infections. This doesn’t include when he has a moist cough, where we treat him with two weeks of nebulizer antibiotics at home. If there is no improvement after that time, it requires a hospital admission for IV drugs.

Cam Pep

Cam using his PEP mask. He will try anything to get out of doing it

He has progressed from percussion physiotherapy to resistance breathing techniques using a PEP mask and “huffing” through a wide pipe to help move any mucous around in his lungs. He is now in charge of his own physiotherapy (of course, under close watch by us, as he is well-known for trying to worm his way out of it!)

His high fat, high salt diet is now easily maintained. It was a massive learning curve when he started solids, but now we just add the “goodies” to meals once separated from the rest of the family’s meal, or add a few extra high-calorie snacks to his lunch box, and extra helpings whenever he requests. Cam is a little on the shorter side, but in terms or weight and build…he is actually a little Buddha for a CF kid , who are generally notoriously lanky/skinny.

Cam eating

This kid LOVES his food!

He is pretty good about dealing with his condition. About two years ago, he had a little breakdown. He suddenly didn’t want to do his physio. He didn’t want to have his medication. He didn’t want needles. He didn’t want to see doctors. He didn’t want to have cystic fibrosis anymore. There was a bit of focus on him at school as he was in pre-primary, and the other kids were taking notice that he was a bit different. In the past, his outlook was “I am different, and that makes me AWESOME!”…suddenly, it was “I’m different, and I don’t know if I like it anymore…”

We decided to just pull back a bit and allow him to work through it on his own. We didn’t push him in to anything he didn’t want to do (with the exception of physio and medication…sorry buddy…no escaping that!) We let him talk things out. I spoke to his teacher, and they tried to make things as discreet as possible at school (ie. having medication away from the rest of class)

I have to admit, I was a bit surprised at how young he was when his “breakdown” came. I am sure that many more are expected over the coming years, but I’m sure we can work through it.

We don’t stop Cam from doing anything. We want him to experience everything he can. He recently started sword fighting classes, which he loves considering he loves pirates and ninjas! He has a great circle of friends who understand his condition, but don’t see him as his condition. He plays pranks on his family, much to our chagrin sometimes. He also gives the best cuddles (but not in front of anyone….of course!)

Silly Cam

Nothing is going to stop this kid!

Life certainly isn’t easy when you live with cystic fibrosis, but it certainly isn’t as bad as what I envisioned it would be when he was first diagnosed. I’m not making light of the condition….CF sucks…it truly, truly sucks. But we have been lucky with our experience so far….a lot of other families haven’t.

May is CF Awareness Month. 65 Roses Day is on the 27th May this year. All I ask is that you take a moment to familiarize yourself with the condition. I’m not going to push for donations (though it would be awesome if you could) but the whole focus is awareness.

I just hope that sharing our experiences, it sheds a little light.

 

Bella 🙂

 

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CF fundraisers

There are a few of people doing things to raise money for cystic fibrosis at the moment, so I thought I would share their efforts in the hopes that they will get closer to their goal.

team_cropGavin Pearce is a 49-year-old father of three who lives with cystic fibrosis and has twice been the recipient of a double lung transplant. On Saturday 23rd February Gavin and three teammates – Rob Pearce, Leanne Bodley & Phoebe Robinson – will form the Lung Distance Swimmers and take on the epic challenge that is the Rottnest Channel Swim. They aim to raise $25,000 for Cystic Fibrosis WA as they battle the wind and the waves.
You can donate go to the Lung Distance Swimmers page to keep updated and donate. You can also listen to an interview via podcast here

 
Spinner_logo_finalSix every day office blokes have decided to trade in their comfortable spinning office chairs for spinning bike wheels as they set off on the 2013 Gibb Challenge from the 19th – 23rd of May. This expedition will take them 700km in a team relay across some of Australia’s toughest outback terrain as they work hard to raise their target of $50,000 for Cystic Fibrosis WA. Give them a helping hand to reach their goal by visiting their online fundraising page

 

 

 

Baker's DelightThis next one isn’t exactly fundraising for cystic fibrosis (but does have CF kid as a spokesman!) W.A. Baker’s Delight are holding a Bundraiser for PMH (Princess Margaret Hospital for Children) on the 16th March, 2013.
Other states are fundraising for these major hospitals across the country:
Royal Children’s Hospital (VIC)
Royal Children’s Hospital Foundation (QLD)
Sydney Children’s Hospital (NSW)
John Hunter Children’s Hospital (Newcastle, NSW)
Canberra Hospital (ACT)
Women & Children’s Hospital Foundation (SA)
Royal Hobart Hospital (TAS)
$1 from every 6 pack or hot cross buns sold at Baker’s Delight stores state-wide will be donated to the PMH Foundation

If I come across any other fundraisers, I will let you know. Feel free to share any links to fundraising pages in the comments below.

Bella 🙂

The “MacFarlane” family story- part 1

Here is another diagnosis story for you all.
I met Helen MacFarlane on Facebook little more than a week ago through Carly Mara. She has happily shared her own family’s diagnosis story as another guest blogger. Again, we are going to break it up in parts. Here is part one…

I hope you enjoy this powerful story as much as I have!

Bella 🙂

On every shooting star I use to wish for a child. And when I had my first-born, Christian……I felt that I only wanted one as I couldn’t possibly have enough love to love another….

And then as I reached my late 30’s, we decided that maybe we had room for one more. We both entered childhood with trepidation, both of us having incredible dysfunction of an abusive nature as children and not wanting to relive the pain of that again, by having our own. Pleasure and pain…….

Falling pregnant with the first child was slow, falling pregnant with my second was just as slow with a painful miscarriage in between. Again I wished on my stars that I would have a child, a little girl, a doll to dress up….I prayed and I wished and suddenly, amidst the familiar biliousness, I was holding up a stick with pee on it, exploding the words…”Im pregnant!!!!” to a surprised husband and a pleased, but slightly embarrassed neighbour.

My pregnancy this time was strange. Can I call it that?…..I tended to spend long periods of time in my pyjamas, I sulked and I was covered head to toe in a very nasty and raised, lumpy rash. I have never seen anything like it…it was angry and weepy and itched so bad, despite my attempts at an “organic” pregnancy, I was medicated to prevent scratching myself to death and bleeding in my sleep.

We decided with this pregnancy that we would also find out the sex of our child and also name the child early, so that “jelly bean” would have an identity. We soon discovered that we were having a girl and we decided to call her Asha Rose. Asha – because I love anything Indian and her name means “hope” in Sanskrit and “Rose” for my obsession with roses…little did we know how symbolic her name was to be…

My labour was intense and very quick. I discovered during the 1/2 hour drive through a very dark country road why the bar above your head in a 4WD is called a “Jesus Bar” I also learnt that just because you walk in reverse into a labour room, doesn’t mean you automatically get an epidural!!!

So….there I was….delivering a baby…drug free….with a husband who clearly stated earlier in the pregnancy…and I quote…”I do not want to go down south”…and I don’t mean, on holiday……we were already living “down South”!!!!

The beautiful baby, Asha

The beautiful baby, Asha

I recall afterwards feeling very empowered. I was crying, as you do, after the labour..lamenting to the midwife…that I had been known as “stupid” for so long, by my stepfather…and I couldn’t believe that I did THIS amazing thing and that no body could take that away from me…I cried because I did something right and I was very proud, of myself….my reward was Asha.

I recall as well sitting upwards, cross-legged on the hospital bed, with Asha on my lap and I was admiring how amazing she looked, that this baby had been gifted to us. I kissed her face a million times, almost to reassure myself that I wasnt having a dream and it was then that I noticed she tasted salty. I looked out to the window across at the beautiful rose garden and admired the roses…..and didnt give that a second thought. I was amazed that she was sweaty and it was 2 degrees outside!!.

When I handed her over to the Nurses for the Guthrie test, I didn’t give this a second thought either. I had the air of confidence of a second time Mum. “Just dont drop her on her head”I probably thought to myself as I was grateful for the cup of tea and Scotch finger biscuit left by the Orderly.

She came home wrapped in a beautiful purple wrap. She was given the appropriate attention that a newborn expects, food, warmth, shelter and bundles of love. I was casual and confident this time. I breastfed her whilst I checked the mail, watered the plants, answering the phone….I was marvelling at how easy she was…and I remember bragging to someone that this baby being second WAS easy….but I was very wary…..this was too perfect, something doesn’t feel right. I even voiced my concerns to a close girlfriend. She reassured me that I was worrying with no concern and to enjoy this special time. I continued on, with this gut feeling.

Then Asha developed a wheeze that wouldn’t go away and would scream at 2pm every afternoon and lift her legs to her chest. After she filled her nappy, the pain seemed to subside. I did mention to my clinic nurse who made notes in the “yellow book” and then she talked about colic and wind pain. The wheeze? Perhaps a cold?

Then we got the phone call. Asha was 5 weeks old. Our Doctor in Bridgetown rang us at home and I answered. He was using words like ..disease….no cure….Cystic Fibrosis…PMH….team of specialists….bed waiting……physiotherapy….normal lives….management. And then, at that exact moment….I actually felt my heart break……I felt “let go” by God and I felt like I was floating…in a bad dream. I was crying…..uncontrollably…..wet…..heaving…cannot breathe….oh my God…….Why?…wanting to vomit…..wanting to scream…needing…my Mum….vomit…..no breath….And..Im doing this, in front of my 4-year-old and my husband. Very very private feelings and emotions…..in public view. Once I had composed myself and comforted my husband, we silently went through the motions of heading up to Perth the next day. My son, Christian came over to me as I had my head buried in my arms, he touched me on the shoulder and sang the Good Night Song that GWN play every night. Fat Cat jumps into a bed and a song is played, poxy one…to the tunes of a keyboard… He sang this song like an angel….and then gently said to me…”I sang this song to you, to cheer you up….I love you”……It was his way of providing me with a safe place to hide…..I hid in his flannelette arms and cried some more….

We drove 5 hours to Perth the very next day and once settled into our room at PMH , the onslaught of specialists attacked our very private lives and opened the guitar case of emotions and plucked at every string. We were sitting on the bed dumbstruck at a new vocabulary with words such as enzymes….physio…percussion….malabsorption. I should have been listening but instead I’m looking at them blankly thinking “Why me? Why us?…….I ate the right foods…..I did good deeds……Ive already suffered at the hands of others……why are we being punished???” I met nurses Liz and Charlotte and cried in front of them…..Dr Wilson and cried solidly in front of him too. My emotions were raw and I felt incredibly vulnerable.

To be continued…

Good news

We finally got the phone call with  results of my son’s bronchoscopy. He doesn’t have Pseudomonas anymore!

YAAAAY!!!!

 

 Yesterday passed by without a word from the hospital, and that little knot of worry started forming in my stomach. If results come back clear, we normally find out by Monday afternoons. I was already forming plans in my head of how I was going to get to Perth with my son so he could go into hospital, what I would take, and mentally arranging a car for my husband to stay home with the other three children.

The wait must have been getting to my husband, as when I came home from work early this afternoon, he had called the hospital himself to ask for results. A couple of hours later (after being told that they would call him back) the phone rang. The Pseudomonas have been eradicated.

However…he does have another (different) bacteria growing in his lungs, but they aren’t terribly worried about it. He is to go on Tobramycin nebulizers for at least two weeks to kill his current chest infection.

So while it wasnt all great news, it was still a relief.

Life continues as normal…well…as normal as normal is in this crazy household!

Bella 🙂

 

We are home…again!

I seem to get a lot of people who think Albany is in nothern WA...so here is a map!

We are home again from yet another trek to Princess Margaret Hospital for Children.

The young one had to have a follow-up bronchoscopy to make sure we have eradicated the Pseudomonas from when he was hospitalised with them back in August.

We left Wednesday morning on the 450km trip to Perth to be at the hospital for specialist appointments that afternoon.

When we arrived, we found clinic to be very quiet. Turned out the respiratory doctor we were due to see was away on maternity leave, and the replacement doctor was off sick, so they had cancelled respiratory appointments. But since we (and one other patient) had travelled considerable distance, they kept our appointments, and found us another respiratory doctor that was floating around.

You would think that since there was only a couple of us waiting for appointments, that we would be over and done with fairly quickly…but no. It took the usual amount of time and we didn’t walk out of the hospital until nearly 5pm. But back to the main story…

My son’s lungs apparently sound pretty good, which is good to hear considering he had a nasty cough that was starting to worry me!) but that is what they said when they discovered Pseudomonas the first time, so I’m not holding any stock in that assessment. But due to that cough, he has to start on Tobramycin nebulizers now that the bronchoscopy is finished and we are home (he isn’t allowed to have nebulizer meds for four weeks before a bronchoscopy as the drugs can affect the results) But everything basically rides on the results from the bronc.

The doctor has also agreed to put our daughter on six monthly visits now (YAAAAY) They are extremely confident now that she does not have CF, but because of her history of chronic coughs (she gets croup at least every one to two months, her latest bout of croup lasted about five weeks) they want to keep an eye on her for a couple of years. They are considering the possibility that she may have weak lung/throat muscles (something she should outgrow in the next few years) and that is why she snores while sleeping, and breathes so heavily when awake. We havent been able to get a result from a lung function test from her, but hopefully the next time she does one, she will be able to do it properly and can get reassessed then. They have also said that they will give us some help with her worrying eating habits (but that is a long subject suitable for another blog post) which is a relief.

Vitamin D...main source? The sun...

Back to my son though. Once finished with the respiratory doctor, we saw the gastroentologists. At the last clinic visit, my son had to have some blood work done to check his vitamin levels. It turns out he is very deficient in vitamin D, enough so that a “bit of time in the sun” wont be enough, and he has been prescribed a new medication, Cholecalciferol (or Bio-Logical Vitamin D3), to help boost levels. He will have to have blood work again in six months to see how his levels are going then.

After that, we went on to see the dietician. They were very happy to see that his weight has improved greatly, as the little porker has put on nearly a kilogram in the last three months!! But they had a little bit more “bad” news (I guess you could call it that), my son is also anaemic. Thankfully, he is only slightly anaemic. They aren’t worried enough to put him on iron tablets, but the main reason for that is because they are worried about the constipation side effect of the tablets. It’s a bit of a surprise that he is anaemic as he absolutely loves his meat. We can only try to add more leafy green veggies and eggs to his diet I guess. The dietician did say that it could be due to the fact that he has a dairy protein intolerance, as anaemia is something they see in people who don’t consume enough (or none at all) dairy. But they will keep an eye on it and will give him tablets when/if they become concerned.

Doesn't look like much fun, does it? 😦

A couple of days later, on Friday, the young on went in for his follow-up bronchoscopy. We still don’t know results yet, and we weren’t really given any indications of what his lungs looked like. We were kind of busy afterwards dealing with the aftermath of the anesthesia. Apparently the procedure didn’t go quite to plan, it sounds like he kept somewhat waking, or moving, during the procedure. He also didn’t wake very well, and especially didn’t like it when the nurses came near him. As only one parent can go in to a child in the first stage of recovery, my husband went this time. I could hear my son screaming in the corridor. I could tell he was having a rough time coming to again. When they walked out to go into second stage recovery, I noticed blood over my husband and son. Yep, my son has ripped the canula out of his hand and blood went squirting everywhere, apparently. He lost a fair bit of blood, but is doing ok.

Thankfully, it didn’t take long for him to be “awake” enough for us to leave, but we still had a rough night that night as he suffered spiking fevers and incoherence, something he seems to go through after having anesthesia these days. Two days on, his appetite is still suffering a bit, but he is happy and playful again, though nap times are probably a bit longer than usual still.

For now, we wait on the phone call from the CF team with the results from his bronchoscopy. I have to admit, I’m not confident that we have gotten rid of the Pseudomonas, but I’m trying not to think about it for now. At least we have plans in place should he have to back to hospital to have intravenous drugs for two weeks again.

Please keep your fingers crossed for us for good results!

Bella 🙂

Current pseudomona update

A few days ago, the young one had his PICC line removed (the long-term IV line)….join with me as I yell YAAAAAAAAAAY!!!

The last few days a nurse had been coming to the house to administer his medications. I was incredibly happy to be away from the hospital. Our local hospital is old and very boring! They are in the process of building a new one….lets hope there are more things for children to do in the new one!.

Now the PICC line is out, such begins the next step of treatments, which is 6 weeks of oral antibiotics (Ciprofloxin) and nebulizers (Tobromycin). The oral tablets obviously taste foul as the little bloke shudders every time he swallows them, despite them being buried deep in apple puree. But at least he is eating them with no real problems and there are no ill side effects!

Everyone asks me if he is getting better. Well…I hope so! If it wasnt for the test results, we would actually have no idea that he was sick. He is still his usual cheeky, rambunctious self. He is by far our worst “terrible two’s” that we have experienced, and the attitude and tantrums certainly havent decreased with the Pseudomonas!

But I will continue to get you all updated as treatments continue. Thank you to everyone for the well wishes!

Bella 🙂

 

Homecoming

We are home!! I don’t just mean back in my home town, I am writing this from my own living room!! YAAAAY!!!

So now for the full run down.

We did the long trip to Perth, for the second time in a week, last Sunday and booked into the hospital (hmm…that sounds as if we were booking into a hotel, doesn’t it? Far from it!)

On the Monday morning, he went into theatre to have his PICC line put in to his arm.

He came out of theatre pretty easily this time. The anethetist gave him a little something while he was still under so he wouldn’t go as mental when he woke from the anesthesia (like he did last time)

That afternoon they started some heavy-duty antibiotics. These drugs are so strong that they have to do blood tests to check levels to make sure that they aren’t too high as it can cause permanent deafness! Scary!!

So, two weeks of intravenous antibiotics are due. To be followed with six weeks of nebulizers, twice daily, and strong oral antibiotics (not sure how often those ones are yet…but I have been told they taste foul, so we will see how that goes down….if they go down that is!)

 

We had an absolute blast in the Perth hospital. When he wasnt hooked up to medicine, we were reigning terror on the corridors of Princess Margaret Hospital (PMH). There is something to do or see on every floor. We didn’t go into any of the other wards. We weren’t even allowed to wander around too much on our ward as the were two other CF patients on the floor, but we spent a lot of time on the entertainment floor which has heaps of video games, arcade games (the young one loved the game where the croc heads peep out and you have to bash them over the head), clown doctors, Captain Starlight, artc/craft. You name it, they probably have it!

Every now and then, they get special guests into the Starlight room. On the Monday, we got to meet to Miss Universe Australia. Absolutely stunning girl! She was giving out cuddles and taking photos with the kids. When is was the young one’s turn, she bent down, arms out ready for a cuddle…but at the same time, he noticed the fish tank behind her and when running straight past her yelling “FISH!!!!!” The only problem, he still can’t pronounce “f’s” yet…he replaces them with a “b”…so with replacing that single letter, you can imagine what five-letter word Miss Universe though he yelled at her as he ran past!! The look of shock was absolutely classic! I had to very quickly explain “Fish….FISH!!!” to ease the tension. I have a photo of them cozying up against the fish tank looking at all the Nemo’s and Dory’s.

On the Wednesday, the Perth Wildcats basketball players paid a visit. We missed them unfortunately, but no doubt they were making good use of the outdoor basketball court.

By Friday, we got the all clear to be transferred back home to our local hospital. My god…never going to do it again! I always knew that our local hospital sucked, but we have only ever really had anything to do with the maternity section…where they were wonderful.  At 2am on Saturday morning, I was ready to throw my son back in the car and hightail it back to Perth. Eventually, the local hospital got themselves sorted, but we had already made arrangements for us to be able to go home and have someone visit the house to administer his antibiotics. It is so nice to be sitting in my comfy recliner, catching up on my taped tv shows,  and having a glass of wine. The young one is pretty happy to have the tv rights to himself in the play room as my older three are staying with the parentals for a few more days while he is still having IV medications. We are due to finish those this coming Monday, possibly Tuesday.

To look at him, you would have absolutely no idea that he is sick, except that he has an IV line coming out of his arm. He is his usual rambunctious self.

So I will keep you updated with his progress over the next few weeks.

Bella 🙂