Tag Archive | lungs

The realisation of mortality

Hi everyone, I’m sorry it has been a while….but it’s been a bit rough around here lately.

Cam during nebuliser treatment

Cam during nebulizer treatment

Cameron’s health hasn’t been the greatest for a while now. A few weeks after our last annual review, he got very ill. I hadn’t seen him that sick since he was diagnosed! We found out his bronchoscopy had results showing he was growing Staphylococcus (staph), which can cause major havoc on CF lungs.
We started nebulizer antibiotics, which showed good results for a while.

He is now coming into his fourth week of nebulizers, but in the last few days, he has gone downhill again. He is coughing a lot, breathless, has no energy, grumpy as hell and off his food. This has caused us some major concern!
We are just waiting for two more new antibiotics to arrive from the specialists in Perth. One is an oral antibiotic, designed specifically to treat staph infections. The other is a very strong nebulizer antibiotic (again, designed specifically for staph), which when it arrives, we have to arrange with our local hospital to administer the first dose so that he can be medically monitored for any side-effects. Providing it all goes well in the ER with first dose, we will be continuing them at home. So for the next month, he will be on four different antibiotics!!
I am glad that we have narrowly dodged a hospital admission at this stage, though I have this niggling worry that it will inevitable. Please wish us luck and we welcome all healthy vibes that are sent our way!

I will keep you updated with his progress when I can.

We live with CF every day. We know the risks involved, what might or even what WILL happen during the journey of this condition. But knowing it, and being AWARE of it are two very different things.
I constantly talk about CF. I raise awareness as much as I can. I try to stay up to date with medical updates. But when your little one is very sick because of the condition, you remember, it’s not just about being knowledgable. The “la-la land” bubble bursts and all these things you “know” about are an “in-your-face” reality. This is my son’s life. This is his permanent battle. THIS SUCKS!

While we are dealing with this, the dirty “C” word has infiltrated itself into the family. No…not that dirty “C” word…..the other one….cancer. I don’t want to breach the privacy of the family member who has been battling this for a while by revealing too much on my blog (and I hope they don’t mind too much that I have written about it right now)ย Our head spaces have been zooming all over. We have also had to come to terms with the fall out of this nasty, evil condition as well.

My own health hasn’t been the best lately either. I am currently trying to quit smoking. I have to do this, I need to do this….I WILL do this. But like previous attempts at quitting, my lungs go spastic on me. I always get chest infections when I attempt to quit. But a recent incident brought home my own mortality.
For a week, I was tight chested, wheezing slightly….the symptoms I usually get in the days after my last cigarettes. But three nights in a row, I couldn’t lie on my right hand side (left hand side or stomach was fine, as was upright…I could breathe). On my right side, I would instantly stop being able to breathe and would go into a coughing fit that would take half an hour to recover from. I tried to hold out until Monday, when I could see my doctor, but on Sunday morning, I woke up on my right hand side. It took forever to be able to catch a breath. I was legitimately worried about dying right then and there….so I took off to the emergency room.

They gotta go. I KNOW I have to stop!

They gotta go. I KNOW I have to stop!

I was treated very thoroughly…more so than I ever have before. I had three nebulizers to relax my airways, and two steroid tablets. They did a chest x-ray, which came back clear and gave a sputum sample. They even inserted a canula into my hand, gave me a fluid drip and took blood to test everything from white blood cell counts, to salt and insulin levels. It didn’t feel like an asthma attack, but it didn’t feel like a usual chest infection either. While they treated and got rid of most of the symptoms, most of the tests came back clear, so we don’t know exactly what caused the respiratory distress yet. I have to call for the last few results tomorrow…so hopefully I get some answers.

While I am feeling much better, the experience scared me greatly. With Cameron’s current health scare, plus the cancer in the family, all I could think of was “I am not allowed to die! I can’t do that to the family…not now! I am too young! My family is too young for me to go!” I came to realise, like most mothers, while I am very good at looking after my family, I also need to look after myself! I am getting back on track with my diet, the cigarettes are in the past, and I need to look after myself better mentally and spiritually as well.

I have been under a lot of emotional stress lately. I am run down. My husband and I have started scaling back our workload a little to take the strain off. This is already an immense relief. I need to make more time for my family.

I need to make more time for ME!

Bella ๐Ÿ™‚

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CF annual review-July, 2013

A couple of weeks ago, my husband and I took Cameron on the long trip back to Princess Margaret Hospital for Children in Perth for his annual CF review. We also had our daughter, Eva, in tow so that she could be reassessed for her respiratory issues.

Our first appointment of the day was for Cameron’s lung function test.
He had just started doing this new type of lung function test at his last clinic visit only 3 months prior as he was now at an age to start using the testing machine, “Mr. Wobbly” (called so because of the way it makes your cheeks wobble during the testing phase)

Cam's stage one lung function test- "Mr. Wobbly"

Cam’s stage one lung function test- “Mr. Wobbly”

He aced it on his first go, and had no trouble completing it again this time around. He also did this new test that they have started doing on younger kids where they breath in pure oxygen for a short period, then test how long it takes for the carbon dioxide levels to go back to normal. This apparently helps to indicate if all areas of the lungs are being used. He did very well and completed this task without an issue. Very proud mumma right here!

Cam during stage two of lung function test. I'm sure there is a proper name for this particular procedure, but I missed what it was...

Cam during stage two of lung function test. I’m sure there is a proper name for this particular procedure, but I missed what it was…

We had a quick look at the results on our way back to the clinic area, but could not make heads or tails or what the figures meant. But since nothing was highlighted in red, we assume everything is still going really well.

Then he had to be measured, as is routine at the start of every clinic. The little fatty boombah put on another 300-400g in the last three months, putting him just under 20kg. This puts him on about the 80th percentile for weight.
I can’t remember how tall he is (110cm rings a bell…) and I’m not sure how much he has grown recently, but they are happy that he is steadily travelling along the 25th percentile for height (which is great, as I was told that height can quite often be stunted in CF)

The first CF team member we saw was the physiotherapist, who makes sure that he is still undergoing his physio techniques properly. This meant watching him use his PEP mask, doing a few percussion motions and making sure we are still using the correct hand motions. She also checked his shoulders. Apparently his left shoulder is a bit “tight” which can cause a hunch. This stops the chest cavity opening up properly and the lungs don’t take a full breath. So we have to get him stretching and hanging (like on monkey bars or tree branches, etc)

We then saw the dietician and gastroentologist together. They were very happy with his weight gain and his dietary intake.

Cameron has an intolerance to fresh dairy (milks, yoghurts, cheese…etc…but once cooked, it’s not a problem…so things like cakes and sauces aren’t a problem!) It’s more of a dairy protein intolerance. We figured it out when he was about a year old and we were trying to make the change from formula to cow’s milk. I tried everything under the sun….goat milk, oat milk, rice milk, lactose free milk….everything….and soy is the only thing he could tolerate. Apparently the protein levels in these other types are very similar to cow’s milk….which is how we came to the dairy protein intolerance diagnosis.
We were told that if kids couldnt tolerate these foods by the time they were about 5-6 years old, they probably would never be able to,

dairy free
So the team were very happy to hear that is starting to tolerate fresh dairy a bit better. He has normal dairy yoghurt, custards, a bit of cheese (though not too much in a day, or it sets him off all bloated, gassy…and well…messy!!) We havent attempted cow’s milk yet, but he is still happy enough on soy milk. When he has normal dairy foods, we find it helpful to give him an extra Creon tablet (enzyme medication which helps to break down the fat in his foods during digestion) So if he were to have some yoghurt, and fat content requires him to have 2 Creon tablets, we give him 3 instead….which works well.
They told us to keep trying to introduce dairy to his diet and see how he goes. Soy doesn’t have the same calorie and fat content of dairy, which makes it more difficult to boost fats in the CF diet, but we obviously seem to be managing!

They also told me that they now require all CF patients to take Vitamin D supplements as the multivitamin (VITABDECK) was not substantial enough for absorption levels. Since Cam was already on Vitamin D levels, and on a higher dosage than what they normally make standard for everyone, he is to remain on this dosage as it seems to be working for him.

They were going to take some blood samples during his bronchoscopy later in the week to test for other things, like salt levels (which there was a slight increase in his daily intake of sodium chloride solution) and iron levels (which have been borderline needing medication for a long while now, but they are hesitant to prescribe medication for it as it can cause constipation, which can already be a major issue for CF-er’s with their digestive issues)
I havent heard anything since returning home, no phone calls about needing extra medications, so I can only assume that they were nothing to worry about until we see them again in three months.

We then saw the respiratory doctor. He was very happy with Cam’s progress, especially since he has managed to escape all the winter bugs so far (wish I could say the same about the rest of the family though!!)

I'm sure there are plenty out there who can relate...

I’m sure there are plenty out there who can relate…

When we arrived at the hospital (since we had just gotten off the highway and went straight to the hospital for appointments) I realised I made a MASSIVE mistake…..I had left ALL of Cam’s medications at home, including his Creon!! I can’t stress how much an issue this was. Since he had only eaten things in the car which didnt require any medication (fruit, etc) we didn’t realise until then that we had no medications so that Cam could have lunch!
We sucked it up, and gave Cam a sandwich anyway, thinking we would just have to deal with the mess later (without Creon, food passes straight through, undigested. It makes an almighty, smelly mess in its wake ๐Ÿ˜ฆ )ย 
We got a doctor to quickly write a prescription for all of Cam’s medications and handed it in to pharmacy at the hospital, hoping it would be filled quickly.

But no, we spent more time waiting for the medications than we did seeing specialists. Normally, to avoid the wait, we hand in the prescription and pick it up the next day, but due to the urgency, we had to wait around. That was more exhausting than seeing the team!

There is a lot more to write about, such as Cam’s bronchoscopy, and Eva’s check up…both are long stories that can be set aside for another post. So keep an eye out!!

Bella ๐Ÿ™‚

An eventful CF clinic visit…

Only a few short hours ago, we returned from our latest CF clinic visit at Princess Margaret Hospital in Perth.

The drive up (about 450km) was horrendous due to a lot of road works. The weather was even worse!

When we finally arrived to the hospital car park, my husband was trying to get Cameron out of his car seat (while Ethan and I were loitering around nearby, waiting) when the heavens opened. Hubby had the smart idea, and jumped into the backseat to wait it out.
Ethan and I, already slightly damp, were in a position where we were committed to making a run for it.

That was when things really pelted down!!!

Ethan hates water, especially cold water, so he was screaming and crying during the whole mad dash. Mark and Cameron caught up soon after, but missed the worst of it….but we were all drenched. Luckily, I has the smart idea to grab one of the kids clothing bags (as we hadn’t booked into our hotel room yet) so I was able to change the boys into dry clothes, but we were still bombarded with looks of sympathy from the other families in this clinic area as we were provided with towels by the nursing staff. I literally had to pour water out of my shoes, but my main concern was the boys catching a chill and developing a cough in this cold weather.

Cameron has put on a staggering 3kg in the last three months, which is awesome! While we have never really struggled with weight gain, there was a concern for a while when he was hardly putting any weight on…but that was during a time when the house was constantly bombarded with the gastro bug.
He is very stocky and muscular…and not at all happy with hubby and I at being told he is too heavy to be carried around any more!

Meet "Mr. Wobbly"- called so because he makes your cheeks "wobble" during the test.

Meet “Mr. Wobbly”- called so because he makes your cheeks “wobble” during the test.

Since he turns four years old next week, he is now old enough to try the “Mr. Wobbly” machine to test lung function. So off we toddled to the respiratory department to attempt this new test (previously, he undertook the infant lung function test, where he was sedated, placed in a special vest, then had air pumped into his lungs, then the vest would squeeze it out and record the reading)

I am very proud to announce that his first attempt went very well and we were able to get a good reading! While heading back to the clinic area with test results in hand, hubby and I had a quick read…but could not make heads or tails of the results. We assume that since nothing was highlighted in red to show that levels were outside of normal results, that everything is all good!

With a lot of waiting around, we finally saw the respiratory doctor, who was very happy with Cam’s progress.

We brought up the subject of my daughter, Eva, who is a CF gene carrier, and has floppy airways and frequently gets croup. There is still a slim possibility she may also have CF, (though the specialists are fairly confident she doesn’t actually have it)ย but due to her current respiratory issues, they are still monitoring her.
Winter is horrible for her, with endless bouts of croup and nasty sounding coughs, which can last for weeks. For the last three weeks or so, her coughing has progressively gotten worse, especially in cold air, worse again at night, then worse again when she lays down in bed.
The doctor recommended undertaking a week of Augmentin Duo (antibiotic) for a week, then trying Ventolin (reliever inhaler) for a week. We are to try them for a week at different times (instead of the same time) to see the results of each. He was pretty sure that neither would work, and she may have to trial Flixotide (steroid inhaler)
Since we have only just come home today, we will be starting these treatments tomorrow, so I will keep you updated with her.

According to Ethan, lollypops do NOT make everything OK!

According to Ethan, lollypops do NOT make everything OK! (not an original photo shown)

Cameron and Ethan both received their flu vaccinations while we were waiting in clinic. Cam is used to being poked, prodded and jabbed, so when the nurse pushed the needle in his arm, he gave her a small, indignant “Ow!” (Hubby was with him, and I was sitting about 5m away with Ethan, and I didn’t even hear a peep!)

When Cameron walked back, proudly showing off his lollypop reward to his brother, Ethan was quick to say he wanted one too. I warned him that he was going to have to have some medicine first in order to be allowed to have a lollypop too. He gave me a brave nod andย a confident “Okay!”,ย took his father’s hand, and went to meet the nurse.

Within minutes, all heads in the clinic turned towards our direction in alarm when we all heard hysterical screaming of pain!!! When the adults saw me laughing, they realised that my son was receiving his shots, and gave us looks of sympathy, while giggling along. One very red-faced, teary five-year-old boy walked up to me, holding his lollypop like a second place trophy while looking at it as if to say “Was it worth it, for THIS?”

Little does he know, since it was the first time he has had the flu vaccine, he is going to have to go through the ordeal again in four weeks time for a second dose!

In a way, it was a pointless trip, as Cameron’s health is pretty good, but we needed to restock medications (and it would have cost a bucket load to have them sent to us), he was able to take the next step is CF monitoring by being able to undertake this new way of lung function tests, and the boys are prepared for winter with the flu vaccine (just need to get the rest of us done now).

As much as clinic visits are a drain- physically, emotionally and financially they are an essential part of CF treatment.

Bella ๐Ÿ™‚