Thank you

Isaac is doing so much better, following intensive IV antibiotics, steroids, lots of pain relief, and now, some back up oral antibiotics to boot. 

He can breathe, and enjoy headache free days. 

We’re now hopeful for a few months of good health, with the bacteria that camp out in his lungs knocked to a minimum (thank you antibiotics) his inflammation under control (thank you steroids) and his airways cleared (thank you surgery and our heroic NHS). 

Thank you for all the amazing support, anonymous chocolate fudge in the post (thank you if this was you!) cakes our doorstep (from the poet in my heart) and all the love for our darling brave boy. 

I hope you too, can enjoy this summer to the full. Recent losses have reminded me, my friends and my colleagues just how precious each and every day is. As Eva always said, love, love, love x 

Pictures from our Rosa beans 10th birthday. 

Surgery part 2

There was some confusion, being in one hospital post surgery, needing to be discharged from there with new drugs, and yet needing to get back to another neighbouring one for other drugs and care. In that confusion (and partly, Isaac being desperate to get back to his single room and bed on the CF ward) we pushed for an early discharge and a nurse kindly walked us over for handover instead of waiting for a porter. 

Back on the CF ward, with the morphine wearing off, the pain was building. Isaac is terrible at asking for what he needs, despite a high pain score when asked. The bleeding was difficult to manage too. He did cheer up after some cold jelly (all he could really manage that day). 

Exhausted from our 5am start, I stayed until Dan could get there to take over, and we had agreement from the ward that he could stay with Ise that night, his pain and nausea being so bad. For that, we are very grateful. Actually, grateful is not the right word, more, righteous - he is just 17 and navigating adult care for the first year. IV drugs continued and they had a disrupted night with meds, obs, bleeding, pain and coughing. 

All said, we are hugely relieved and thankful that it’s done. The surgery was a success, and the IVs and steroids that he is on now give him the best chance of a good recovery. 

We’re now home, with IVs ongoing. Due back in next week for lung function tests. 

As always, our love and thanks go out to all the amazing NHS staff. Sitting outside theatre for hours, I saw the many patients/loved ones who take out their frustrations on the admin/nursing staff; Moaning about waiting times, delayed surgery, unsure of where they needed to be and when. I cannot imagine working in that environment and being the brunt of that kind of anger and dismay. They deserve medals, not abuse. No, not medals, an appropriate salary rise! 

Thanks for reading, and all the lovely messages. Feeling very hopeful now x 

Part 1a.

We are home. 

There have been some blood and meds coming out of his EYES incidents. 

But we are home. I’ll write more soon. 

Read some more from me here - LOVE working with my friends at the Cystic Fibrosis Trust x 

The op.

Part one (not because this story is exactly worthy of chapters, but because I am both wired and tired):

After a few days of IVs on the ward, and a LOT of questions about how it works between the two neighbouring hospitals (which seem to communicate very little) and very few answers, we made it to Addenbrookes for his sinus surgery on Monday. He was wheeled through by a porter (to his immense embarrassment) through a strange underground tunnel between the two. At one point, in the eerie silence, the lights flickered off and we found ourselves in a flooded section between the two, walls drip dripping. Not for public access that one. Felt all a bit too ‘The Shining’ for me. 

Once there, no one had any idea that we were staying next door at Papworth, and needed to get back there later that day for IVs. Isaac is super smart, but how anyone would navigate this alone is beyond me. 

We were first on the theatre list, for which we thanked the stars and moons (we’ve been there many times before, late on the list, nil by mouth (for Isaac, you may as well say ‘bury me alive with snakes’) only for theatre to overrun and the operation be postponed. 

The anaesthetist didn’t seem overly enthusiastic about anaesthetising him. We face this almost every op, having to list off his many medications, infections, and weird arse medical history. In the end, we pretty much agreed that this was going to be as good as he gets, and we might as well crack on. 

I was thankful to walk him to theatre as normal (where he amusingly tried to pull off all his probes while we wrestled him back as he lost consciousness). 

Pic. Isaac surfing in times of much better health. 

Afterwards, I had to walk (madly pace) eat (sip Diet Coke nervously) and kill time (I went back to his room in Papworth, and for the first time ever, was pleased to see the pharmacist; no joke, each and everyday on the ward we have to list off all of his medications, times and doses to the pharmacist, plus every doctor or nurse who comes on duty, which normally gets a... little tiresome. This time, we had a lovely chat about teenagers and how they all go through a non-compliance stage. I could have hugged her).

I’d like to add here that I could quite easily have called my amazingly supportive friends and family at this point, a number of whom would have driven up the moment I asked and bundle hugged me to the floor. The simple truth is that when stressed and anxious about Isaac/something as big as this, I am an anti-social bastard better suited to listening weird old prog rock/grunge on my headphones. 

The operation was listed to be three, maybe four hours. I was outside asking to see him after two, and back every twenty minutes after that, until five hours had passed. At first I was told I could not be with him in recovery (now he’s in adult care) but the second person I spoke to (also a Mum, I noted) said of course I could, recognising that he is just 17. But they did say that I couldn’t see him too soon, as it would be too distressing for me (this bit I contend; quite sure my morbid, black imagination is way worse. Plus, it’s not about me!). By the time I was allowed in he said he had been asking for me for an hour (mind you, he also asked me where he was four times, so it might not have been that bad). To say that he was in a bad way is an understatement. We’ve been through recovery a dozen times or more, but this was by far his longest anaesthesia and most complex operation. He was confused, loving, thirsty, in pain and really quite bloody. I wasn’t even sure if he was coughing it up, spitting, or vomiting at times (they did say he would have swallowed a lot). 

The surgeon was pleased with the result. He said the sinuses were even more infected than he had feared. He has now removed everything structurally inside that he can (in case you are wondering, this does not change his appearance at all, only his innards; imagine... in a few ops his nasal cavity has gone from Victorian cottage with cramped rooms, to an open plan house, and now been transformed into a huge barn conversion) meaning that this will be his last BIG sinus op. 

The polyps will come back, that’s just shitty CF sinus disease, but with better access for medication, we can prevent them for much longer at least, and polyp removal is, in comparison to this, a walk in a very pretty park. 

The morphine was fun (love the stuff!) but soon wore off. His saliva glands went on strike. Desperate, I suggested the gummy bear taste challenge just trying to get his mouth working again (he won). He was moved to a new ward. Shaky, pale, unable to walk or really eat still. 

The suffering at times felt unbearable to watch, and yet, my boy? He never once complained and was polite to everyone. 

Above all, we/he knows he needed this, to end that constant cycle of infection and the headaches, and so it’s such a relief to finally have it done. Thank you, our darling NHS. We thank you to all the stars, cheese moon and beyond!  Part two to come (getting him home and far more antibiotics). Thank you for all the lovely messages x 

On the ward and prepping for surgery

Isaac finally agreed with the doctors to come in. He’s not happy, but for now, is at the grudgingly accepting stage. Naturally, he feels this is all my fault (default teen state). 

Plan is for two weeks of IV antibiotics (worryingly soon after the last course) to help his lungs (we’re back to endless coughing by night, and grunting chest clearing by day) and to ensure he’s well enough for the anaesthesia on Monday. 

The operation itself, Isaac is more than happy to have. He knows from his four previous sinus surgeries that afterwards he can soon breathe more easily, has way more energy, and the rotten headaches disappear. This we are desperate for. 

Going to theatre is never a jolly, but I don’t usually start to really panic until the surgery day. But this time... feels a little different? I’m not sure if it’s the added complexity of it being managed by two different hospitals (we learned yesterday that there is an underground tunnel between the two, great, but the communication between them, we seem to have to manage? I hope to be proved wrong on this point, but so far, no one seems to be able to tell us how this works); the size of the operation (it’s considered fairly major); or the duration (Isaac has had countless operations/general anaesthetics in his life, but most have been an hour...maybe two? This may be three or more) - all of which make me worry. 

Manically pacing up and down the corridors will at least be good for my step count I guess (I’m really reaching for more positives now!). But I remind myself that this is.... good. It’s really good. We’ve waited for this for months, and yes, the IVs add to the burden of treatment and he is not happy about this (once he is well enough, we hope he can come home and I can finish the course at home for him) - but they give him the best chance of a quicker recovery and lessen the risks - and this much needed surgery will help get him back to a better baseline of health. Hopefully one at which he can fully enjoy his summer - especially as his college is now out (he’s missing the last couple of weeks, but has completed his exams). 

I reluctantly left him there (I can no longer sleep on the ward). Him grumpy and tired already. Me fussing and secretly a bit weepy. The view from his room, filled with fluffy clouds and distant green hills, might help.... were it not for the thought of what goes in those incinerators - which we joked about for a while until it got too obscene and I started to gag. 

More soon. Thank you for caring. Big shout to to my NZ contingency for their massive love and messages of support.... V, I love you! x 

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 of your wishes, as even when signed up, the decision becomes theirs after death.

Hospital, if he will.

Hospital busy week. Pre-op and CF clinic, in preparation for his long awaited sinus surgery. His CF team want to admit him to the ward for IV antibiotics before, during and after his surgery. Isaac is not keen. 

Ideally, they want him as sterile as possible before major surgery so close to his eyes... brain....blood stream... and we know he’s hosting at least two bastardly bacterial parties right now, and maybe a fungal fiend too. 

He needs to complete his college carpentry exams this week, so the bed on the ward is booked for later the afternoon he finishes. In the meantime, we try new antibiotics to try and jack up his lung function - which he hopes is a get out of jail free card. I’m not so sure, but will fight my battles, should I need to, nearer the time. 

The good news is that this surgery will improve his QOL significantly. 

Love, love, love x 

Pony mad Rosa bean.