It mocks me now!

After two and a half weeks my bladder finally forgives me.... in fact mocks me by peeing upon request, as if we never fell out. 

I won't count all of my chickens yet, as I came home last weekend without a catheter, and ended up going back in for another... but I do feel much better this time. Still some weirdly high white blood cell counts... but hopefully the antibots are doing the trick and we can all get back to some normality. I feel as free as a bird without the damn tubes! Thank you for all the lovely messages peeps, its been emotional x 

PS; CF related blogs to follow I promise, Isaac is doing well, lung function is stable.... but clinic has left us with a few bits to digest first. 

 

Miro always cheers me up x

To pee or not to pee....

Sorry, cheesy I know, and sadly it is a no pee from me. I must admit, it's been a little harder than I thought. After a few days trying without a catheter late last week, I now have one back, and an infection to boot. 

I'm thinking of it like this; my bladder was put into an induced coma for a week to let it rest, and then awoken not feeling happy to say the least. And so a further induced coma is required (and antibiotics) to let the catheter do all the work the bladder normally would. After which we hope it will play ball. I cannot describe exactly how it feels to sit on a toilet, desperate to go but unable to.... if you've ever had a UTI you'll kind of understand, although the pain is different. The opposite of urinary incontinance.... It's a sulking, stubborn, bladder tantrum, refusing to let go to spite me, with some kicks in the abdomen for good measure. 

As if I needed it, the words 'disposable self-catheterisation kits' gave the incentive to keep trying more weight; I'm back in hospital later this week to give it another trial, and try my very best I will. Huge kudos to people living with long term issues of this kind. It's not the worst thing in the world, but it's not much fun either. I can't go to work or walk my dog, but my sock drawer has never been tidier. 

We have CF clinic and a few Isaac related issues to tackle next.... so I need to get well asap. Read something promising here about Pseudomonas and biofilms. I always imagine these biofilms like those slimy green sea weeds that make you slip when you're rock climbing - in Isaac's lungs biofilms help shield the bacteria from the antibiotics that we throw at them, so if we can tackle these, our arsenal could get a whole lot more powerful.... 

Anyway, the whole debacle with my own health has left me pretty much house bound at times, and we couldn't have managed without our families and friends, helping, visiting and calling to keep me sane, taking the piss (not literally, but I suppose they could help with that too now...), and keeping the humour in everything. But most of all to Dan and the kids, thank you for letting me rest when I've needed to, and for not tripping over my pee bag. Love you all, my A-team x 

Listening to this, it's weird one, but it's a grower. Beautiful album. Have a little picture of Obie; 

 

A&E and the amazing NHS

We spent last night on A&E with our little Rosa. 

Let me first say, there is not much more that I hate than people who clog up A&E departments with non urgent cases, least of all those who use ambulances when they could drive themselves. In the next cubicle was a mother and daughter who were there because the little girls heart rate 'seemed a bit fast'. Could be worrying, sure, but as the story unfolded, both the mother and child admitted that this happened quite often, and only when she was feeling a bit panicky. Sure, not a great situation for either of them, but if it had happened many times before, and was related to stressful situations, why did this become an emergency on this random Tuesday night? After a heart trace and some reassuring words from the doctors they were sent on their way. Because this is what the NHS does, it cares for A&E, anything and everything. 

Despite our regular visits to hospital, we've never made the trip in an ambulance, but for our dramatic little Rosa (now 4), it would have to be her vehicle of choice. She fell down the stairs, hitting the back of her head all the way (we think, we only heard the duh duh duh duh duh...). Poor tink. I thought I could manage her tears, and Dan was about to take the big two to swimming class so I ushered them off. However the crying soon turned to sleep, blurred vision (I can't see you Mama!') and then vomiting. So I calmly (my arse) called 111 to ask what I should do, but given the two warning signs of concussion (blurred vision and vomiting) they immediately despatched an ambulance, despite my insistence that I could drive. By now, Rosa only wanted cuddles, darkness and sleep. We spent a few hours in (we were almost allowed home at one point, when she hadn't been sick for two hours, but as we got up to go she was sick into Dans eyebrow) before being allowed home to just keep a watchful eye on her. I spent the whole time there in my PJ's (I have no clothes that fit over a catheter bag of pee strapped to my thigh), whoozy on Tramadol (I'm still on these, post Op, but cutting back, unfortunately I'd just taken one when she fell). Glamorous look I tell you. 

Anyway, I just thought I'd share this tale with you, my lovely readers, as yet another example (as if I need one) of the endlessly amazing NHS. They keep saying the NHS is at 'breaking point', and yes, I see the tiredness in the faces of our fantastic nurses and doctors, and don't doubt that the Trust is in financial crisis, but let's not forget that they continue to provide the most amazing care, with the least amount of complaining. I bloody love our NHS. 

In other news, from a very good friend with a lump in her breast, another whose Dad may be dieing and who has her own health fears, a baby back in hospital again due to Bronchiolitis, Isaac who is back on extra antibiotics for his chest, another friend who has had cancer treatment and a hip op and who is still struggling, and a pregnant friend who is feeling frustrated and upset....  I think we can be forgiven for feeling a little bit cursed right now.... If I believed in luck I would be thinking that surely things have got to get better? They will, they have to! We are overdue a bloody party. My friends, I am here for you, as you are for me (so often). Love you all x 

Our beautiful, feisty little Rosa; 

 

  

Internal organs are so overrated anyway.

I recently read in the paper that the internet makes us over-share. As in, we wouldn't normally tell people all that we do online as we would to peoples actual faces. I guess in some way this probably true of me too. I certainly try not to bore people with endless pictures of the kids, or tales of our worries, but I do all of that in this blog quite regularly (sorry about that!). But on the otherhand, those people who know me will say that I have a long history of over-sharing in real life too (usually when least appropriate), a habit of ruthless, unapologetic truth-telling, perhaps to a fault. So this here follows a tale of how I have ended up with a bladder strapped to my leg and asking everyone who visits if I smell of pee ... (It's no big deal really, I mean, internal organs are just soooo passé, no?).... 

In case you are new to this blog, I write it to raise awareness of Cystic Fibrosis and Organ Donation, because to put it bluntly, my 11 year old son has CF, and may well need a lung transplant at some point in his life due to this. 

Cystic fibrosis (CF), a genetic condition which he was diagnosed with at 3 weeks old. In his lungs thick sticky mucus obstructs the airways and forms a breeding ground for infection, and each infection causes progressive lung damage. Isaac keeps relatively well on the most part, but the relentless daily regime that CF demands is staggering. At the start and end of each and every day he has to be plugged into nebulising machines to clear the mucus from his chest, and inhaled antibiotics to help manage infection, as well as chest physio (PT) and currently a prescription list 23 meds long. He has an unwanted live in companion (a bacterial chest infection called Pseudomonas) and when he coughs, it's not like ours, it rattles and wheezes and deeply reverberates in his ribs. Otherwise, he is typical cheeky 11 year old, who, above all, wants to be normal and not to be defined by his condition. CF awareness helps raise not only vital funds for the charity we support (the Cystic Fibrosis Trust) but also understanding of this chronic condition, and hopefully reduces the number of really quite stupid questions he is asked (So when did you catch CF? Can't you just take cough medicine? When will you be better?). Raising organ donation awareness we hope will increase the number of people on the donor register, and reduce the number of people on the list for organs (who all too often die waiting due to the shortage). 

So, all of that, plus, I really quite enjoy writing. And although I never usually re-read blogs, occasionally I do look back to the same date a year or two before, to see what we were doing then, and so it serves as a kind of journal for me. It also means I can keep family and friends up to date when we are in hospital and I can't face talking. 

All that said, this blog is mostly about Isaac and his health. He is almost 12 now, and I have the utmost respect for his privacy, despite my own habit of over-sharing. I would never write anything that he might not want others to know (and I do keep back somethings because of this). When it's about him, it's not my story to share (although if I had been writing this when he was a baby I'm pretty sure it would be much more poop orientated). If I'm not sure, I check with him, and on the most part he is happy for me to write about his health, as my blog is boring, dull and not at all epic or boss, he can't imagine anyone being interested (the girls on the otherhand love it, and always ask me to post pictures of them pouting). 

And so, in the spirit of being open and honest; I went in for a simple Op last week, which went fine. Not interesting enough to let anyone know about. However, because I had a general aneasthetic, I had a catheter (presumably so you don't wet yourself during surgery). After the Op, everything was fine, but when the catheter was taken out, I was told I could go home 'just as soon as I could pee', sounded simple enough.... 

But pee I could not. Not with running water. Not with deep breathing. Not with wetting my neck. Not even with my lovely nurse Marcella doing a little pee pee dance and thanking the gods of the rain. Nothing. My brain has seriously fallen out with my bladder and they are refusing to talk. Never before have I wanted to pee so much. 

And so I am now home, with my new handbag. Not exactly the kind I had hoped for, but hell, worse things happen! I am now resting my bladder for a week, and will then have the catheter removed and hope by then the fall out will be over, and my bladder will again talk to my brain. I am assured I do not smell of pee. 

Two observations about this whole debacle; Firstly, I have medical insurance with work, so had my Op privately. Since we spend so much time in the bosom of the NHS (CF is so specialist, it's likely that all his care will be with the NHS) this felt really odd to me. It was not the room, the nice TV, or ensuite that got me though, it was the time that the nurses spent with me. I so wish we didn't stretch our NHS nurses so much, and we could let them do the kind of caring they would like to do, given the time. Secondly, when the tables are turned, Isaac is every bit as caring for me as I am for him. He has been amazing, and perhaps this is a good thing for us, we both get to appreciate the flip side of the coin. Only for me it's short term (we hope). I won't have a pee bag strapped to my leg for much longer, whereas he will always have CF to contend with. But we are a team and we will do it together. 

This is also a breeding ground for bad toilet humour, our favourite kind. 

Have a great day x 

Balance

Getting over my cough took longer than expected, still shaking it off now. One thing I never have time for is going to the doctors myself. Never mind though, we enjoyed the break very much, so much so that the night before going back to work, I felt almost bereft at the thought of leaving the kiddles.... and I love my job. It seems the more time we have together, the more I want. But the plan is for me to work for as long as Isaac is well enough for me to do so, while I can still juggle work and family life, so we can gain some financial security. 

Isaac is not quite well (but had a good Christmas). It is both frustrating and deeply saddening at times; He has been back at school three days, and had to come home early for two of those. Clinic soon, if he can wait that long, if no better this week I'll take him in early. We have something called 'open access' at the hospital. Which essentially means we can call anytime and talk directly to the on-call registrar. This also helps us bypass A&E sometimes and go directly to the ward, but during normal hours it means we can go directly to the CF team in clinic (outpatients). The problem is knowing when to go. The relentless conversation in my head usually goes something like this....

He is in more pain than usual, it could be another bout of DIOS, I should take him in.... 

Or, he may not have taken his Creon in school, and he might just be malabsorbing? Better stay home, wait and see. 

He has headaches and nausea that his anti sickness drugs aren't helping, I should take him in....

Mind you, there's lots going round, we've all been ill, it's probably viral, better not take more germs into hospital. 

He's still not right, needing painkillers everyday is not right. Are these side effects from one of his many medications? Has he had enough salt today? I'd better take him in.....

Ahhh, the hospital has winter vomiting virus, better stay away. Don't want to catch that! 

His chest doesn't sound good, is that a wheeze? A crackle? A new chest infection, or an exacerbation of his existing live-in bugs? I should take him in.... 

Actually, sending in a sputum sample to the lab would be better, then we'll know what we're tackling. Extra physio at home while we wait for the lab results, that'll do the trick! 

No, he's really getting no better, I'm taking him in.... but he has a (insert fun kid thing) today, he would be gutted to miss it, can we put it off one more day...? 

I don't think I am alone (in the CF world) in feeling like this. It can often feel like you're damned if you do, damned if you don't, and judging exactly when the right time is to start extra antibiotics, or take them in to clinic (or worse, A&E) is a mindbend. At the stage we are at, there are only rare occasions where CF can require emergency treatment, but inaction could cause long term damage. On the other hand, I've been that Mum that rushes in on many an occasion too, and been sent home after no more than a cuddle and a sympathetic look. And that is no fun for him, nor is it reassuring that this life is any way 'normal'. 

While I juggle my own work/life balance, I'm finding at this age with CF, for Isaac, it's the health/life balance. He doesn't want to spend ages every day doing treatments, but he doesn't want to be unwell either. He doesn't want to be 'different', but he is. Right now it feels like a constant struggle to keep the many factors of his life balanced, as so many of them are important, and there are only so many hours in the day; 

1) CF treatments (to stay well), 

2) sports (to keep fit, and see 1.)

3) the things that make him happy (I'd love to say spending time with family, but PS4 might be slightly higher up his list!)

4) feeling normal (very important to him psychologically) 

5) education. 

Due to the amount of school he has missed, number 5 seems to be taking a hit right now, which is unsurprising and not his fault at all, but the extra work he needs to do to catch up hits numbers 2, 3 and 4. And it's vexatious to think that even if he puts in the extra work to catch up, his next admission to hospital might set him back all over again. 

So in my fuddeled up way, I think what I'm saying is, we're all feeling a bit unbalanced, and 'CF sucks' features highly in our home vocabulary right now. 

In other news, Dan and I are enduring 'dry January'. Dull. I've started my new job, and nothing has gone terribly wrong so far. Little Rosa becomes evermore fiery, feisty and funny by the day and Anouk said to me the other day (after a chaotic morning school run where they each couldn't find something before we left) 'Jeez Mum, there is no way I am having three kids.... it's AWFUL!'. Only sometimes sweetcheeks. 

Happy New Year x