For the last 16 years, around his birthday, we go in for a day long series of tests. This gives the team a good idea of his baseline, and progression of the disease (this is on top of his usual CF clinic visits, which we have on average, maybe 10 a year). The annual review typically includes:
Full bloods
Blood glucose testing (testing for CF related diabetes)
Chest X-ray
Liver and abdomen ultrasound
Bone density tests
Full lung function tests/spirometry
Port flush
Cough swabs/sputum samples for the lab
Exercise tolerance tests
Psychology review
Dietician review
CF nurse review
Doctor review
Physio review
Pharmaceutical review
Due to COVID (numbers at Addenbrookes are coming down at last, 12 in ICU and 50 more on wards currently) today was a stripped back version. No ultrasound, blood glucose or bone density scans - instead they will review the blood results first, and run these tests later should there be any concerns.
Today was pretty much my favourite day all month, which seems mad, as annual reviews of yesteryears have always exhausted us, mentally and physically.
I cannot tell you how much love and gratitude we have for our whole MDT (multi disciplinary team), who go above and beyond for us every time, and even in these most difficult times, take the time to listen, consider and create a plan that works for Isaac and our family.
I’ve been encouraging Isaac to take the lead in talking to his team for a while now, with limited success. But today he really stepped up, asking me only to review his prescription list. He spoke politely to everyone - beginning to participate in his health care plan. The only downside was that due to his weak and damaged veins, from years of needles, it took four nurses and five stabs to get bloods. He never complains.
When Isaac was maybe 4 or 5, we had a few years where I dreaded both CF clinic and annual reviews to my core. Not only was the news always mixed, and often disheartening, his behaviour in clinic could be terrible. I was usually on my own, but sometimes with a little Anouk too, and we were confined to a single room for hours due to cross infection risks. All for discussions he did not understand and tests that he did not want. He once threw an orange at our consultants head (still sorry, Richard). Those were the days of sticker charts, rewards for good behaviour, and me silently screaming in my head until it throbbed (OK, I may still do that occasionally). Once I reversed the car pretty hard into a huge concrete post, stressed and trying to escape the damn hospital car park. Little Isaac cuddled me, and, our roles reversed, had to tell me that everything was going to be OK, as I sobbed snottily.
Today, we laughed, we talked more in a day than we have all week, we joked about, we discussed our hopes for the future, and even agreed on what he could do better, treatment wise. I know I always say this, and believe me, he can be a right pain in the arse too, but always, he is my absolute hero.
Test results will come in over the next few weeks. For now, no treatment changes; although his coughing is increasing again his lung function is stable, so we await lab results, since he’s only been off IVs for a month.
Next up.... COVID vaccine as he turns 16 on Monday! That is my advance warning of some baby to teenager picture spam to come ❤️
Have a great day, keep well and wishing you all a vaccine day in the near future too x
