Operation

Isaac had the sinus surgery yesterday. In his surgeons words; imagine the sinuses like a house, with a kitchen, living room, bathroom, study.... by removing bone reaching as far as his eyebrows, Isaac’s house is now open plan. This doesn’t change the CF disease in his sinuses, but it’s opened everything up which means the drugs can do their work. 

The Dr said he will most likely still be treating Isaac until his own retirement (and he is not old) but the hope is that he will not need such a big operation again, if at all. The surgery went well (it was three hours... in which I paced around, ran to the toilets feeling sick, drank tea, paced some more, stared blankly at walls, couldn’t face calling anyone, soaked in the misery of a hospital amid pandemic...). He predicts that once recovered, Isaac will feel like a new person as it was worse than he expected inside, full of infection. He said the impact on his quality of life in these recent months would have been huge. 

In recovery, I found Isaac delirious, shaking so much that I had to hold him from falling out of bed, and scratching like crazy. 

The nurse called the anaesthetist back, who said it could be a reaction to the anaesthetic or the pain drugs, and prescribed IV antihistamines. These worked almost immediately. Only his pain score was rising (Isaac rarely complains, so when he says his pain is 9/10 I know it to be true), so they prescribed IV fentanyl, saying that if it was the fentanyl that he was reacting to, it would be fine now he had the IV antihistamines. Only, while the fentanyl sent him back off to cloud cuckoo land, I peaked at his chest and back, and he was covered again in a raised, angry red rash. It took a few hours to calm, and it’s one to add to his notes for future reference (although, they say they would not rule out using it again, as it’s such a powerful drug, but they can treat with antihistamines at the same time if they need to). 

Neither of us are squeamish, so the bleeding, which lasted maybe 12hours, was manageable, but while he was floating on the morphine high, blood was coming from his nose and mouth in clots. At times he would retch or cough and wasn’t even sure where the blood was coming from. On the plus side, he needed little oxygen post op, and his sats remained OK throughout (big positive for him). 

We got back to the ward a few hours later, where he rested, and we tried to remove the dried blood so he looked a little less like he’d been in a fight or accident. We had the option to stay, but his Dr was happy for us to go home and call if we needed anything, so we came home for the night, and he slept and slept. On crawling onto the sofa myself, the exhaustion hit me and I knew with absolute certainty that I when I woke up, I would be ill. Sure enough, I am full of cold, and so is Anouk. Now we must try and avoid passing this on to Isaac - it’s all he needs. 

He is now back at the hospital to be checked over, as he feels that one of the stents in his nose (which need to stay there for three weeks) has dropped down. Because I’m not well, I can’t be with him, which I hate. We just want him home now, warm, safe and recovering. For once, it’s not such a bad time to be locking down. 

Sorry, not the most cheerful of posts. I feel like someone mopped the floor with me. But under this snotty exterior, I am relieved as fuck and so, so glad. The surgery is done; Isaac can see! And yes, it’s going to take a few months to feel the full results, but he will, and this in turn will help his lungs. 

And I know I always bang on about this... but, that boy? He’s a fricken hero! ❤️

PS: and just to be clear, this was all micro surgery, up through his nose. So no scars, and no peeling his face off as someone had asked, thankfully! To see amazing surgery like this happen at our very own Addenbrookes and the Royal Papworth, including lung transplantation, I urge you to watch ‘Surgeons, the edge of life’ on the BBC (pictured below). Amazing stuff, for the non squeamish. 

Pictures from Addenbrookes, where he is treated now, and the Royal Papworth, where he will attend next year when he leaves paeds, which is now next door and the grounds of my pacing up and down. 

Surgery

Today, start pre-op antibiotics and steroids. Friday, pre-op assessment over the phone. Sunday, we all go into isolation to reduce COVID and other infection risks. Monday he has a COVID test. Monday/Tuesday, I try and juggle a busy work schedule, with three children who are not allowed out of the house, can have no visitors, in their half term holidays (they would have gladly taken isolation should it have been in school term!) who are high on early Halloween party treats that I have bribed them with. Wednesday, on the ward for 7.15am, hoping we get an early slot in theatre, but mostly that it all goes ahead (we been through pre-op nil-by-mouth before and had it cancelled at the last minute for emergency surgery coming from ED. Me anxious, and Isaac nil-by-mouth = not a great mix). Thursday, home, we hope, all going well. He is much safer here, so if we can get his pain under control, and the discharge drugs in time, we will run as soon as we can. After that, we spoil him and his sisters rotten. 

This is how I hope it all goes down, but I feel like I am walking down a corridor of poised spanners, just waiting to be thrown at us. His DIOS is not under control (he went to school today, but ran home and vomited immediately). This, or his chest infections could get worse before then, meaning they would not operate. Or COVID (cases are now rising rapidly in our area too), either for him, or that cases rise so much they delay planned ops. 

It’s such a weird feeling.... longing for a surgery that scares us, is very painful, and has a long recovery time with no guarantee that he won’t need it again? But then we see him with his beloved ice pack on his head, the nausea, the cyclical infections, and we know this needs to happen, and it needs to happen now. 

Hoping to write next on the other side of the Op. Keep well everyone, and take care x 

PS: Fundraising news coming very soon, watch this space! ❤️

Kandinsky ❤️ This one always makes me feel Christmassy. 

A date.

CT scan this week, surgery before the end of the month. Cannot tell you how pleased we are (I may have cried a little when they called). 

However, it’s an oxymoron; we know/he knows he needs this to feel better longer term, but at the same time it is risky, scary and painful surgery. It’s a relief to have a plan and no more delay, but something we also absolutely dread to our bones. For now, we keep our fingers crossed that the second CV peak does not prevent planned operations again, as that would undoubtedly be worse at this point. His lung health continues to be impacted by his sinus disease, and that’s not going to change until surgery resolves this cycle. 

Today I went back to work. At least, two days a week in the office (three days at home). I NEED this. I feel bouncier already - I appreciate that many are working from home and loving it; we all manage in different ways, but lockdown has only highlighted to me how much I need to be with people (possibly some of that is to distract myself from the day to day stress of CF). Anyway, it may be short lived; should the R number rise in this area I will stay home, but for now, I will take that monitor, that desk, that comfy chair, and seeing ACTUAL PEOPLE (in 3D!) and I’ll enjoy it while I can. The data on people with CF contracting COVID remains super positive - and he no longer needs to shield any more than we do. What a weird disease?! I think we’re only now beginning to gain any understanding of it. 

I am thinking of all that are struggling with the restricted pandemic life, it is not easy, and I know I am so much luckier than most to even have the options I do. 

Keep well x 

A weirdly empty office.

Back again.

DIOS came back with a vengeance. Another hospital visit, X-ray, more drugs. We have him home; more gastrograffin, and two other drugs to add to his usual regime, trying to ward off further incidents. He is in less pain already. Just when I thought he might manage a whole week at school, it ended up just being two days before the vomiting began again. Some good news, we have the CT scheduled for this week, after which, we can hope for a surgery date. Hopefully before damn CV prevents planned surgeries taking place again. Life feels like one big, chaotic mess. 

These lot keep me smiling. Take care, keep well x 

Isaac is doing much better.

Thank you for all the well wishes. 

Next steps... get the CT and surgery scheduled. I am on the case! x 

Bassin de lumieres ❤️ - still need to go. One day! 

Wishing I had better news

Bacterial chest infection. 

Fungal chest infection. 

Coughing. 

Sinus pain. 

Headaches. 

Vomiting. 

Headaches while coughing or vomiting.... the worst. 

... and now DIOS too (read more about what DIOS is here). And no, it is NOT the same as normal constipation. 

Isaac had an emergency review in hospital today. Abdomen X-ray. Bloods to test for pancreatitis (results pending). 

X-ray confirmed moderate to severe DIOS. They have allowed us one night to treat it at home with 100ml of Gastrograffin (possibly the worst tasting drug ever), lots of rest and fluids. If he is sick again, cannot consume enough fluids, or is still in as much pain, he will be admitted tomorrow for more treatment and IV fluids to help his poor kidneys. If he becomes in any more pain, we head to A&E (as there are risks of intestinal rupture, which really is as fun as it sounds). Isaac is being his usually stoic and wonderful self, laughing about how full of shit he really is (literally). DIOS is not new, he suffered a lot from this a few years back,  which is why we’re allowed to try and treat at home first, but it’s frustrating as we’d hoped it might be an issue of the past. 

Sinus, lungs, digestive system; all separate issues, but undoubtedly each issue impacts his health overall, and consequently, each other. 

We discussed his pain management more generally with his doctor, and agreed that what he ultimately needs is the surgery. They will continue to lean on the ENT team, and we will do the same. He needs the CT first, but they even have a backlog for those (damn COVID). 

We will get him well... but shit, it feels like one thing after another sometimes, and if anyone deserves a break, it is him. 

The next fundraiser plans are coming together... more soon on that x