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) 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 and a confident “Okay!”, 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 🙂

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