A tiny bit broken, but with a beautiful picture

NGL (my teens latest acronym of choice).... the last couple of weeks have been tough. 

Isaac refused to go into hospital, so we’ve been doing IVs at home. The doctors chose to pick their battles wisely and did not insist on him coming in. Any other time, we are the first to request, even beg for, home IVs and avoid an admission to the ward, allowing him a better quality of life. But this is the first time I’ve questioned it. To convince me, Isaac promised to commit to doing all his physio and nebulisers (all the daily treatments that he still needs to do) - but he hasn’t. We argue. I beg. He does a little better. He does a little worse. I collapse and crumple a little more. 

His CF team tell me that they often see this playing out at his age, and he will learn. But while we wait, we risk his lungs becoming more and more damaged - much of which can be irreversible. He says he understand the risks and doesn’t care. I don’t know if either part of that sentence is really true. I show him that I care - is that not enough of a reason to try? 

Today is day 14 - hospital review tomorrow to see if we can end IV’s. I’ve said I won’t do a third week at home unless he pulls his weight too. I’m exhausted, and tied to the house by five daily doses that only I can mix up and administer (he has thus far refused to be trained) and that we cannot be late for. 

I’d never normally complain; we’ve always been in this together. But now, I feel alone in fighting for his health, and it’s a pretty crappy feeling. I’m like a pea without my pod. Sanctions are not working. I need him to try harder - and all the while, his headaches worsen now he’s off the steroids, and we know the next admission is looming for his sinus surgery (if we ever get a date) - so know the next hurdle is heading our way. We need him as well as he can be for anaesthesia. 

My beautiful and talented friend kindly painted me this amazing portrait. Cannot tell you how much I love it! To see more of her incredible art, visit http://www.vollerthun.com/ - thank you so much Rachel ❤️

New drugs and... home

We are home from hospital. IV’s kicked off. Trying a new drug cocktail (Mero and Tobi). 

Symptomatically, he seems worse. The cough is deep, rumbling, reverberating against his ribs. But lung function tests today were better than the last few days have been, which is both surprising and promising. The mucous is on the move, we hope. He has accepted that he needs this intervention, finally, which makes everything, calmer? As per his norm, he’s taking it all in his stride, and although the day was long, we had some giggles. 

Due to bank holidays and staff shortages on the ward, it looks like he’ll be admitted for the latter part of the course, rather than the first week (which would usually happen) for some hardcore physio to help his battered and mucous filled lungs clear. He’s still hoping not to go in at all - but let’s see what the doctors think next week, and test results. Bloods and sputum in the lab now. For now, we treat the bacteria we know he has (PseudoA). 

The house is once again set up like a hospital; drugs stacked everywhere, needles and syringes in boxes, glamorous yellow sharps bin on display. The best thing about home IVs (other than Isaac feeling well, of course) is packing them away at the end and appreciating having home as we know it back. 

Happy to be home with a plan. Have a wonderful Easter break all x

Throw back photo of my sister and I. Thank you Jo, and all of our family, for your support at these busy times, especially with our gorgeous girls ❤️

Cystic Fibrosis is a life limiting, genetic condition, affecting some 10,000+ people in the UK alone. CF sufferers often, as a last resort, need to trade in their damaged CF lungs for the lungs of a generous stranger. To sign up to support organ transplantation, please visit https://www.organdonation.nhs.uk/ and tell your loved ones (next of kin) of your wishes, as even when signed up, the decision becomes theirs after death. Thank you. 

  

Hospital, again.

Clinic today was, as Isaac would put it... ‘not the best’.

We don’t know the team at his new adult care hospital well, so we are getting used to them, and them us. New doctor today, who really took the time to talk to us and discuss options. 

Isaac is not doing his physio or treatments as he should, and I’m out of my mind with worry. He is honest with us and his CF team about it now, at least, but his excuse is that he forgets. I disagree as we set out all his treatments each morning, and we remind, beg, tell him numerous times a day. We talk to him, we explain the risks, he makes promises, and does well for a few days, and then.... repeat. 

One problem in CF is that he feels no immediate improvement when doing his treatments. As an asthmatic myself, I know if I forget to take my inhalers twice daily, I’ll be wheezing pretty quickly. Taking my inhaler though, I feel this immediate and lovely relief in my lungs. For Isaac on the other hand, airway clearance and nebulisers make him immediately feel worse (at times, endless coughing ensues). 

But he is smart, he gets it. He understands the need, but still, he is lazy with it, and for me, that is heartbreaking. I remind him that we endured literally thousands of hours of holding a mask to his face when he was a babe/toddler (he first grew the nasty PseudoA around 18 months old) watching Thomas the Tank Engine on maximum volume and on repeat to get these treatments done. Now technology means nebs are so much quicker, silent, portable.... how can it feel harder now than it was then? 

Talking through this with the doctor (kind but insistent), looking at his lung function tests from today (rubbish), and his recent CT scan (worrying) - we’re looking at another admission to hospital for IV antibiotics and some serious physio. This is in addition to impending sinus surgery, for which we still don’t have a date.

Right now, he is refusing to go in, but he’s said this before. We have another week on extra oral antibiotics, and a chance for him to crack on with some proper physio at home while we wait for a bed, in case he can increase his lung function without IVs, but it’s not looking likely. The CT shows too much mucous plugging. 

Home IVs are an option, but the Dr and I agreed, unless this is combined with him committing to decent airway clearance at home too, it won’t work. And right now, I can’t trust him to do this - and that is very hard for me to say. We have always fought for home IVs, although they exhaust me, as these give him a quality of life that hospital does not and we get to keep him close - but right now, maybe hospital is what he needs. This feels like tough love in its rawest form, and that’s not something I cope well with. 

The consultant repeatedly told him that he is just seventeen, and the irrefutable evidence on the CT shows signs that this repeated cycle of infection and inflammation, along with the regularity of his exacerbations and his occasional non-compliance with treatments is resulting in irreversible damage, and that is significantly concerning at his young age. 

This is not a sudden decline. Rather a gradual one which is harder for him to recognise and easier for him to deny; if not for the test results. As the doctor put it -  this is time for intervention, but a two week hospital stay is still a hard sell, however much we try. 

Things feel tough right now. I must say it’s not hugely helped when we are asked by every new CF team member ‘so, is Isaac on Kaftrio?’ and having to explain again and again that he is in that last 10%. To support our fundraising for the CF Trust, who are very focussed on not forgetting that last 10%, please visit my fundraising page here x 

Anouk and random tree ❤️