Hospital goodbyes.

You know you have been in hospital too long when... 

On your last day the bank puts a stop on your card, as it detects suspicious activity because you have spent THAT MUCH on M&S cheese and onion sandwiches. 

The kind lady in Amigo calmly comes after you to tell you your card didn't work, knowing exactly where she would find you, as you do the same route every morning in your PJ's and slippers. 

The sweet guy in M&S tells you all about his Tinder dates. 

The doctors hug you. 

The nurses cheer as you finally walk out the door, taking your little dude home at last. 

Today is a good day x 

Going home.

All going well with test results (from the bronch over this week), we should be going home tomorrow, after three and a half long weeks. 

This has been like no admission before. Where usually we come in because he is less well, and we need IVs to bring him back to his baseline to prevent further damage; or when we come in for DIOS, to restart his digestive system; or we just come in to treat a new bug; this time we leave a little beaten and bruised, still coughing, and not quite sure - who won this round? 

When we came in, his lung function had dropped to 30%. At the worst point, it was 17%. To put this into perspective, if he had remained at this kind of level, we would be having discussions about lung transplantation. Yesterday he blew a 54%, which is low for him, but massively heading in the right direction. 

I once wrote here about the things I worry about, and 'sudden decline' was on that list. In all likeliness, this is what we're looking at here. There is a high chance that the impact of this infection will be significant, and he will have lost lung function permenantly. So although we are heading home, we will be back even more frequently than before: 

For more regular lung function tests; to discuss the bronch results and make a plan for the near future; for the doughnut of truth (CT scan); for nasal surgery in November; and most likely, more surgery to have a Portacath fitted (a permenant IV device... I will blog about this later). 

He will also start on a planned IV schedule, which means that we will come in every 12 weeks, for two weeks of IV antibiotics. This is to better keep his infections at bay, instead of coming in adhoc (when he is more symptomatic, his LF drops, or he grows a new bug...). I have explained to Isaac this will not be so different, after all, this is his third lot of IV's in the last 12 months anyway, and his fourth admission - and we're told there are advantages to knowing that you're coming in, to better plan family life around hospital. Still, I'd be lying if I didn't say it was a frustrating, something we knew would most likely happen, but that we'd hoped we could put off for a few more years. 

Last night we stayed up late talking about all of this. We both got tearful. Then I asked him what he was most looking forward to about getting home, and he said 'telling all my friends I've been in a coma for weeks after falling out of a plane'. I laughed, and told him I didn't think anyone would survive falling out of a plane, to which he replied; 'well, I survived this, didn't I?'. 

I don't like to post 'sick pics' but despite the O2, he's peacefully sleeping in this one, and looks so handsome. My little dude. 

Bronchoscopy.

Bronchoscopy is an endoscopic technique of visualizing the inside of the airways for diagnostic and therapeutic purposes. An instrument (bronchoscope) is inserted into the airways, usually through the nose or mouth, or occasionally through a tracheostomy. This allows the practitioner to examine the patient's airways for abnormalities such as foreign bodies, bleeding, tumors, or inflammation. Specimens may be taken from inside the lungs. The construction of bronchoscopes ranges from rigid metal tubes with attached lighting devices to flexible optical fiber instruments with realtime video equipment.

Theatre overran yesterday, so after a day of nil-by-ahhhh-mouth, his broncoscopy was postponed. Not unusual - our beloved NHS is cracking. After a feast (and a coughing fit so hard he threw it all up again anyway) we had a very long night. We fell fitfully asleep early, only to wake later. He was worried, and we talked into the small hours. I cannot possibly describe how much in awe I am of him, and how much we all love him. And in hospital, he lets me love him that bit more. We were placed top of the emergency list for this morning, and went up to theatre early. After the emotionally torturous step of watching him be put to sleep (we've been through this many times, and it never gets any easier - I would defy anyone to not find the eerie vacant stare spine-chilling), Dan and I did our usual; try to eat, drink, talk, but we inevitably end up stalking peadiatric recovery even though we're supposed wait for the bleeper to call us back). Ear pressed to door, I could hear him coughing before the bleeper even went off. 

The good news: he tolerated the procedure well. It was estimated that he would be under for 45 minutes, but they took two hours (our first inkling that not all was well). He came out puffy, pale, and coughing horribly, but a different kind of cough. We were in recovery for an hour more, but back on the ward now, he has sats of 94 on just two litres of oxygen, which is good. His throat is very very sore, as they have been in and out so many times. 

The not good news: his consultant came to see us and described his lungs as one of the worst CF bronchoscopies she had ever seen, even showing us stills from the video of his airways, that I'm not sure I wanted to see, or can ever unsee. Written on the screen I saw 'airways extremely inflamed, from his larynx to his lungs, with copious amounts of very sticky mucous'.

As well as looking at his lungs, they suction the mucous out, but in his case this was not always possible, as it was thick like chewing gum (their words, not mine) and some airways were impenetrable. They also flush his lungs with saline to help shift mucous, and the physio shook his lungs in an attempt to loosen the secretions; all of which add to him feeling so horrendous when he first wakes up (and probably will continue to do for the next day or so). They took away samples of mucous, bloods, and cells to test for his inflammation response (a whole frickin box full of pots - it looked like they might have removed a whole lung) which means a waiting game now for a vast number of test results (will take a week). 

He is asleep now and looking peaceful at last. Although we told him he would feel very unwell when he came to, I'm not sure he knew how much. The plan for now is as before; lots of physio, IV's, steroids and O2 as required for the weekend. Early next week they will have a meeting to discuss the plan for next week and beyond and come back to us. One thing we know is that this will certainly change his treatment regime long term. 

As a family we also need to think a lot of things through, and make our own plans for the future. The news was so much worse than we had hoped - and we can't help feel like we have failed him somehow. He is always compliant with physio, doing the routine set out for him each day, but we're always left feeling there is more we could do... could have done. We just want him home, the girls seem lost without him too x 

Huge thank you's again to all our family and friends for their help and support. I got home tonight to find my gorgeous friend Gem (THE most empathetic person you will ever meet) had come out of her way from town to drop off homemade food and treats, and then spent a whole hour on the phone listening to my sorrows. Gem, the lasagne was lush! Love you x x x 

Blue.

I tried to work today. Not knowing how long Isaac will remain in hospital (days, weeks, months..?) we figured we need to be earning, so agreed to take it in turns (two days on, two days off). One of us is always with Isaac, and the other works and looks after the girls (with a huge amount of help from our wonderful parents). But by lunchtime, Dan had called with the news from the doctors round; 

They have identified that Isaac now has a (CF related) fungus growing in his lungs, which may, again, explain why he has been so sick. They have decided to do a broncoscopy tomorrow (an operation where they look in his lungs with a camera, and also suck out some of the yucky mucous). This should tell us a lot about his lung health. He has had one before, and the after effects were only to make him feel more unwell. He will also start anti-fungal meds. 

After holding it together quite well for a while, I would like to apologise to the colleague I cried all over, before walking out of work; the pancake section in Tesco which I also cried onto; my Dad, who left with a mascara-tearstained shirt; and the teacher at my daughters parents evening, who I also cried in front of. It's like someone has turned the tap on and now I can't bloody turn it off. 

People seem amazed that I am still managing to write this blog while everything is so shit, and I've been trying to work out why I do: I think its both because I find it cathartic; that putting it into words makes it exist not only in my tormented head, meaning I can be more objective about it afterwards, but also because it lets all my family and friends know how he is doing in my own, carefully chosen words, whereas when people ask me in person (and I still like that they care enough to ask) I am not nearly as articulate; words come out all jumbled, I miss the important bits, spew out lots of rubbish, or I just can't speak at all (in which case people might think I am either rude, just fine, or in the worst place possible - none of which are true).

Tomorrow will be hard, but Isaac is facing it in his usual good humour. We just want him well and home x 

(Feeling Rothko blue) 

Slow progress.

Recovery continues at a snails pace. A little less oxygen a day.... a little more at night (which is normal).... the treatments continue, although the plan is to taper off the steroids gradually which is so good (side effects include the classic little moon face, which he hates, and angry grumps, which I hate). We are still under infection control due to his paraflu, so confined to the one room. He is only allowed out for physio, for which he needs to get masked up, wheeled to the garden, where he walks as much as he can (not a lot) afterwhich he coughs so much he is sick. 

Right now, Isaac is sick in a very visible way which he is not used to; sitting pale, wheelchaired, coughing, masked, holding an oxygen canister will do that. CF is generally quite an invisible disease (so much so that sufferers are often berated for parking in disabled bays - sadly lots of people with CF are as sick as Isaac is right now all the time, they are breathing-disabled, which pretty much totally sucks).

Each day, no... multiple times a day, I remind him that he IS getting better, he WILL get off O2, he SHALL get home.... I'm not sure he always believes me, but I'll always be his biggest, loudest and most annoying cheerleader. Someone bring me some PomPoms! 

For all those in hospital, like us, clock watching as the minutes tick by, have some Patti positivity x 

A thousand kisses deep.

Recovery is slow and hard when you have been this sick. 

At the time of going up to PICU, when he was panicked and so breathless that just standing made his heart race and head spin, the staff around us seemed so calm and collected, you're led to believe that this is must be every day shit, and you too should be at ease and go with the flow. This no doubt helps patients and parents keep their crap together. 

Now we are back, we're being told just how poorly he was, and how rare this is, even in CF, for a child his age to become so sick so quickly and to need intensive care. Our shock seems more justified somehow. I am still shaking, I can't imagine how he feels (he does talk to me about it, which is good). 

It also helps explain (along with the abundance of viral infections he has) why recovery is so slow. He is making progress, but it's so gradual that he can't see it, which leaves him very fed up. Being confined to the room is frustrating as hell. There is little in the way of segments to his time, only day and then night; no change of air as he goes over a threshhold; nothing to change clothes for; no shower; no mirror to see how much weight he has lost (a stone already). He sleeps (a lot), eats (a little), watches his laptop, takes his pills, breathes in his nebulisers, has IVs, endures physio..... Some of which are both day and night; it matters very little what time it is, as we're here anyway. The days all merge into one. The alarms beep endlessly. 

However, he is starting to want visitors, he has seen his cousins and a couple of friends, and this has cheered him up. And we have been able to mask him up and wheel him to a garden, to walk a little, get some air. He can manage about a minute of walking now, me carrying his portable O2, holding his arm.  You can see how hard each step is for him, his chest heaving. 

The meeting with one of his Consultants revealed nothing new exactly, but was very hard: We were asked about our hopes and expectations for Isaac's life; how we thought he was coping; and how we thought this acute episode might affect him longer term. I get that we are likely looking at more aggressive treatment in future (IVs given every 3 months as routine, rather than adhoc when he's more symptomatic as he has now, to keep the bugs at bay better) but we're not ready to accept that we can't get him close to his baseline health again. It's just gonna take time. 

We are going away for a weekend soon, and when I reminded him of this, thinking it would cheer him up, instead he groaned and told me he wouldn't be well enough, I let out a little involuntary sob. It's so very difficult as we have no time frame for this; we don't know how long he will have IVs for; we don't know when he will get off the oxygen; I can't tell him when his lung function will improve (the two things we need to happen before we can think of taking him home). But we need him motivated to do the physio which is critical to getting him better - our biggest job now is keeping his spirits up so he can fight this. 

At home the girls are unsettled, and Rosa is acting up no end, which is understandable, but exhausting. None of seem able to relax. 

I want us all home together, a thousand kisses deep x 

Bugs and barriers.

Things are being to look brighter; Isaac's appetite is slowly coming back (we're at the Oreo ice cream and nutella stage - whatever he wants goes!), he is down to 2-4 litres of oxygen, he has more colour, and apart from when he's coughing, or being sick from coughing, he is beginning to feel better in himself. 

Tests have finally revealed that Isaac currently has not one, not two, but three respiratory viruses. Including parainfluenza and rhino virus. There is no treatment for viruses, we just have to ride this out, but this does explain the fevers and why he became so poorly, so quickly. The viruses attack and weaken his lungs, which in turn make his colonised bacterial bug (PseudoA) have a little party (in CF known as an exacerbation). Strangely this makes me feel pretty positive. The fear was that a new, as yet unknown to us CF bug had moved in to join the Pseudo party, which would be much more worrying. This feels more like just shitty luck. 

This positive test also means Isaac is back on barrier nursing (gloves and aprons before you can enter, throw in the bin as you leave) and considered as contagious to other patients. It does feel a little late now, as we've been in 6 different beds since we got here, but who knew. This means our own room (yay) but that he cannot leave it (boo) - so back to commodes and pee pots, and the few steps he can walk will have to be in circles around this small room.

On Monday it will have been two weeks on IVs, which would usually be the end of treatment. This certainly isn't going to be the case now, as he's just too poorly. The doctors have asked for a meeting with us tomorrow, which always slightly panics me. Constant tests means constants test results, and you never know what might happen next. 

Today he got a card from a friend (thank you Ellis) which really cheered him up. Chronic illness is a funny thing; when he broke his leg he got loads of get well cards, but rarely does now (family excluded). I get this though, I mean when do you send one? On his first admission each year? His second? His third? Not every time surely. Anyway, hopefully as he starts to feel better he will be more open to the idea of visitors (quite possibly the visible O2 nasal specs and being so confined to his bed put him off) - I would so love to see him laughing with his friends again. We live right by the school, and I can't help but feel sad when I sit in his empty bedroom, seeing all his classmates head into school, going about their normal day, and not knowing when Isaac will be well enough to do the same. 

Sorry, ending on a melancholy note, whereas today has been a better day. They say you are only as happy as your least happy child, and I think for me this goes for wellness too. Today Isaac is beginning to eat and feel better, and I am beginning to shake less, get stuff done, and can concentrate for more than a minute at a time. Unless he is well, I'm a little bit broken too x 

On edge.

We are finally back on our normal ward, which is good; feels kind of like home. The treatment remains exactly the same (IVs, steroids, lots of physio and O2 supplementation), but we don't need 121 nursing care right now. His sats are still dipping all the time, but more stable on less oxygen than they were. He is hooked up to monitors 24/7 too. 

I had hoped that getting back to the ward would be a celebratory moment for us, that he would be feeling so much better, but sadly not. He still has fevers, vomiting, chronic nausea, endless coughing and becomes easily breathless just getting up on his feet (even on O2). In fact today he says feels no better than when we first came in. He is pale, losing weight fast and like me, has dark ringed eyes. We have a wheelchair (a first) although we are trying to get him to have a few steps each day too. Pushing him down to lung function clinic earlier, holding his portable O2, it was hard to believe that just 12 days ago he walked 16 miles on a school walk. Now simple things like going to the toilet, or washing his hair becomes a feat in itself. Nurses keep asking us if we have O2 at home... so suddenly that seems like a possibility longer term. 

The fact that he is still so poorly has surprised us and the doctors, usually 9 days into IV's he would be much less symptomatic and we would be doing home IVs. The plan is to continue as we are for a few more days before reassessing. If he is no better then, the treatment might have to change. At the moment the assumption is that this is caused by a flare up of his normal PseudoA infection. But it is possible that something else is lurking too, and the lab hasn't yet picked up on it. He is still too sick for the CT scan which would tell us more, so this has to wait. His lung function today was terrible (17%), lower still than last week, but we have to assume this is still somewhat meaningless, as he is too sick to even do the test well. Nevertheless, it is an obvious indicator that he is no better. Going home anytime soon isn't even a possibility. 

Neither Dan or I are able to work right now as we need to be here all the time, as well as attempting to be halfway decent parents to the girls. To say Rosa is acting up is an understatement. She just isnt old enough to understand or process everything that is going on, and she and Isaac are very close, so we understand, but when you're tired and stressed, it's hard to not lose patience when she purposely throws cereal all over the sofa or refuses to wipe her bottom. Things like money, how work will be about my absence, the school he is missing, and the homework the girls just aren't getting done because we haven't checked their books are all worries for another day. 

I'm so tired I might actually pull down my bed in a minute, climb in and rest my head on my plastic coated hospital pillow. Poor Ise is already asleep. It is 17.20. I dream frantic, vivid dreams, wake up on edge and then seem to stay there all day. Good night all x 

Swings and roundabouts.

This may come out a bit fragmented, as I've added to this post bit by bit...

Best news is we have been moved to HDU (High dependency unit). This is a step down from PICU, but not quite back on the ward, where we want to be. He is on a lot less oxygen, and coughing less. He walked about 20 yards (he still needs portable O2 to do anything). After not eating for many hours, he just devoured some disgusting looking chicken nuggets. Some Cambridge United players came to see kids on the ward and gave him a goodie bag, put the first smile on his face today! But for 24 hours now he has had a constant fever and has been sick a few times. The fever is new, and worrying. And due to the sickness, he is refusing to take his Parvolex (a drug which helps protect his liver from the powerful antibiotics), which isn't altogether surprising; nausea + drinking the smell of rotten egg don't really mix. 

We also lost the cannulla last night as it tissued (the drugs started to enter the subcutaneous tissue instead of the vein). This meant we needed a new IV line as soon as possible, but Isaac quite rightly wanted to have the long-line that he had been promised (which should last weeks) rather than more peripheral lines (which may only last a day, so would need repeating). Due to the number of IVs he has had over the years he has limited good veins left, and doesn't want to bugger them up more with short-lived peripherals, as once a vein is used, it's temporarily or permenantly a no-goer for more venous access. He is so brave getting lines, but no one fancies repeated stabbings, and he has been promised a long-line everyday since day 2 when we tried to get one in but failed (now on day 8). This caused a bit of friction - PICU/HDU policy is to insert long lines under sedation or in theatre. His usual way on the ward is awake on entinox (laughing gas), which is also safer for him (best to avoid sedation and anaesthetics when your breathing is impaired). Seems crazy, but it seemed policy would mean we needed to get back to the normal ward to have the long-line put in; but they had no beds. Hours passed. In the meantime, missing IV doses increased the risk that the bugs could become resistant to the antibiotics. Finally common sense prevailed and the lovely, straight talking Dr B agreed that Isaac's preferred way was what would be best for him, to sod the fucking policy, and make it happen. He couldn't believe Isaac had been made to wait so long. 

I have learnt the hard way over the last 12 years to not always sit back and accept what it laid out before us in terms of his care. By nature I avoid confrontation at all costs. That very British politeness is ingrained in me. But it is our job to be his champion, and in this case, his request was not only reasonable, but also better for his veins long term. One doctor from PICU (who I thought was quite short with me earlier) just came to tell me that I was doing a great job, defending my boy and his best interests. There is a massive role for a parent on children's wards, yet sadly, I see many babies and children with no family around them. Isaac has also had 12 years of this - he complains so little, that if he wants to have a long line (a much longer and more painful process) rather than a peripheral line (quick and easy), then credit to him, and I'll fight for that. 

So definite steps forward, but not without frustrations too. Right now Dan is doing the nights, and me the days. This sounds cruel, but he sleeps better on a chair than I do, and I need to be there in the day, as I need to talk to the doctors, be there for the tests and invasive procedures, and ask about the plan. I quickly feel out of control if I don't know what's going on. 

I feel frazzled. I am running on adrenaline. When I sleep, it's with vivid and weird dreams. I constantly feel on edge and can't shake off my shake. And on top of this, I need to come home and be a half way decent parent to two worried girls. Not sure I am succeeding on that front sadly. 

Doodling my frustrations out. 

Baby steps forward...

We are still on PICU, but have lots to feel better about today;

Isaac is still on O2, but no longer with the help with his breathing (Opti-flow). If he gets too tired, he may have to go back on it, but so far, his sats have mostly been stable, and he is feeling comfortable. All going well, we can go back to the ward soon! He also walked another 15 yards on portable O2, and sat in a chair for about an hour. His appetite has been almost non-existent for days now, but last night he had a burger, which is fab. Today he hasn't had much at all, but asked for a red apple (very unusual for him... but you want what you want). He is still sick most days, mostly from the medicines he needs to have to protect his liver from the IV drugs which tastes like rotten egg, or coughing so much. After very little sleep for the first five days in hospital, he is finally snooze full. 12 hours last night, and more today, only waking for coughing. I think it's all finally catching up with him, it's so good to see him more rested. Just watching his chest, you can see how hard his body is working to breathe. Broken ribs are not uncommon when you have been coughing like he has been, so we are fortunate he is OK so far, as this would change the kind of physio he can have. Our main priority is physio, helping to shift his chest full of mucous. It is working (think cup fulls a day...). If and when we do get back to the ward, the plan for the coming days will be to continue with the IVs, steroids, nebulisers and physio. He will attempt lung function tomorrow and when he is feeling better, have a CT scan to assess the damage this exacerbation has had on his lung health, which will determine a longer term plan. 

Today Isaac has been very quiet. I try to read, write this blog, and listen to music throughout the day, but like him, cannot concentrate for long. We are feeling bruised and beaten right now from everything that has happened so quickly. 

I have come home tonight, and found a gift from my very best friends from work, bags full of survival kit (books, mags, food, drink, face masks...!) so amazingly thoughtful. Thank you Gem and Jin. Thank you to our parents and family too, who have been looking after our girly ones, Jo for spoiling them and keeping them busy making things, Lemon, Graham and Floz for taking them out, and for all the lovely messages of support. If I haven't replied, it's not because it isn't very much appreciated. Big love. 

I have seen Isaac in pain many times (...he has had PICC lines sewn into his skin with no anaesthetic as a baby) but seeing him so scared, gasping, unable to breathe is much more haunting. Squeeze your little ones extra tight tonight x x x 

'

From PICU (might be a little nonsensical).

Life on PICU is never boring; change comes by the hour, or the minute. The way in which Isaac adapts astounds me. For example, they gave him a suction and he's now commandeered this himself, regularly sucking the sputum from his mouth as he coughs it up, without giving it a second thought. What he can do himself, he does. 

I know we've been in hospital six days now, but it feels a little shocking how ill he has become so quickly, it's still sinking in for us all. Today the physio had him up for a walk for the first time in days - about 15 yards to the door and back, for which he needed portable oxygen. 

Back in bed, he remains on Opti-flow, on which we can increase and decrease either the flow (the force the air is given, to open up his airways) or the O2, depending on his sats. We aim for comfort and 94 and above. The wonderful nurses tweak things endlessly, making sure he is as comfortable as possible. He is eating very little. He has nebulisers pretty much hourly, along with his normal oral meds, 7 doses of IV antibiotics, and physio at least three times a day, so although he is sedentary, he is busy. Fuck, getting well can be hard work. 

His cough remains as bad as when we came in. He can have a good 10-20 minutes, but then a coughing fit comes, and this can last just as long as the break that preceded it. It is violent, red faced, ferocious, and completely exhausting. Utterly heart wrenching to watch... but is is good, it is clearing his chest slowly. He is still being treated for assumed pseudomonas infection, which is a bug he is considered colonised with. They call this kind of infection flare up an exacerbation. He is not well enough for further lung function tests yet, but the tests he will have in the days, weeks, months to follow this will show what impact this exacerbation has had on his long term lung health. 

Last night I came home to sleep with his sisters. Rosa is asking a lot of questions; why our family is never all home together, how we made sure she doesn't have CF, and why we didn't do the same for Isaac.... Anouk is very worried, and had a big cry with me. They came with me this morning when Dan and I swapped over, and saw Isaac for the first time in a few days. With the oxygen on his face, surrounded by machines, Rosa was too scared to hug him. This is huge for them too, but we try to make life as normal as we can, and the grandparents and family love and distract them as much as they can. 

I am surviving on a diet of Diet Coke and brown bread and banana sandwiches; ideal as I don't need a fridge, and I can make them up with just a single plastic knife. Having a little more sleep helps a lot. Dan is brilliant. 

Apologies for not replying to all messages, if I am repeating myself, or this is entirely nonsensical! Isaac had a funny moment yesterday, where he stuttered considerably, trying to say the word 'sure'. He looked at me, panicked, unsure why the messages whizzing round his brain would not let the word out. I understood exactly how he felt. Our minds are jumbled, our bodies tired. 

I think tomorrow will be a better day. 

High tech care.

We are still in PICU (Paediatric intensive care unit) and Isaac is having help with his breathing. This sounds more invasive that it actually is though; he is still breathing for himself, this just helps by increasing the flow and the oxygen to his lungs so he doesn't have to work so hard. He still needs a whacking amount of O2, between 15 and 20 litres. To put this into perspective, he was on just 3 litres to begin with. The hope now is to gradually decrease this, but for his sats to remain high. This may take a few days, and attempts to lower it today have failed. He is on some new treatments, and is having lots more physio (using a device called a Bird, which helps force his airways open by giving him high dose O2 under increased pressure). The best news is that he is sleeping better at last, and is a lot more comfortable. This is our spot in PICU; 

Despite everything, Isaac thanks everyone that comes to treat him. He can't leave his bed area, so has accepted things like bed baths, commodes and pee pots without complaint. Whereas a few days ago (sorry, I really can't remember what day it is now, what happened when, or my own name anymore) he was battling with us; pulling off his O2 all the time, and finding physio so hard he didn't want to even try, he now actively wants physio, to help shift the gunk on his chest, and becomes distressed without O2 even for a short time. He desperately wants to feel better. He has also wanted both Dan and I to be here with him, which he's never asked for before. It's not PICU that has been scary for him (it's so reassuring to be up here, in this super high tech environment, with amazingly calm one to one nursing care) - but the breathlessness and gasping for air has been traumatic beyond words. 

There are no beds for parents on PICU like we have on the ward. After a few hours here last night they bought me this chair; 

Which is THE MOST COMFORTABLE CHAIR EVER - a fully reclining piece of medical-blue faux leather sumptuousness of great splendour and magnificence, like a bed of roses for a tired and worried parent. I may have cried a little. 

We also have access to a house on site here - managed by the Sick Children's Trust, and run by volunteers. While Dan is here I've been able to go over there for a nap. Again, I may have cried. A few days ago I felt kind of numb, emotionally deadened. Unable to process everything that was happening so suddenly. But today I pass a wee baby on PICU every time I go to the loo, and this has me in floods every time. Isaac is nearly my size now, but in my mind, he will forever be like this. 

He is asleep again now, and this is the best thing for him. He is being an absolute hero. I can't tell you how proud we are, or how much we love him. As we have told him a hundred times, he is not alone in this, we are a team, and CF can do one! 

Thanks so much for all the love, messages, and to everyone helping with Anouk and Rosa, as this is scary for them too. As always, knowing they are happy means we can concentrate on looking after Isaac, so this means the world to us x 

PICU.

Quick update to say we are now on PICU (kiddie intensive care). Isaac is getting a little help with his breathing, and is on 20 litres of oxygen. He is more comfortable already, and I'm hoping he'll get some sleep soon. 

Exhausted.

We have been moved to a new bed right by the nurses station for closer monitoring. I am sat opposite a cheerful sign that says 'Smile each day!' - and I'm bloody trying to, but Isaac is more poorly everyday. His oxygen saturation levels are monitored constantly, and you fast become obsessed with the numbers. Yesterday I was willing it to stay above 90, and did a little celebratory dance at 94. Today he is struggling to get to 88 on 5 litres of oxygen, and 78 is his new low. He preferred the nasal specs he used for a while last night, but really needs humidified O2 which means a mask instead. This is warm, wet and very noisy. He is exhausted from coughing so much, as well as having very very little sleep. He can no longer have even short breaks from the O2, going to the toilet leaves him gasping and dizzy. When he does eat (very little) he has to hold the mask near his mouth while he chews. Apple juice through a straw in the gaps of the mask are our best way of keeping his energy up. 

They have added a new IV antibiotic to the mix, to make it three different drugs (Ceftaz, Tobi and Meropenem) in seven separate doses. Strangely my job has become easier, as he's temporarily dropping four of his usual nebuliser drugs, as they simply aren't cutting through the gunk on his chest. He wheezes, crackles and sounds like he is breathing through treacle - this is endurance breathing; like running a marathon in a spacesuit. Tired doesn't quite cut it. If he continues to stuggle we will be moved to the high dependency unit so that he can use a C-PAP machine; 

"Continuous positive airway pressure (CPAP) is a form of positive airway pressure ventilator, which applies air pressure on a continuous basis to keep the airways continuously open in people who are able to breathe spontaneously on their own."

This will assist his breathing and he won't have to work so hard.

His job is to do all the physio, cough even when it hurts, take his IVs and keep his mask O2 on. Mine is to watch his numbers, give him his normal meds, chest percussion, foot rubs and encouragement. This won't last forever, but to him it feels like it might. 

Oxygen.

Isaac is now on oxygen. His saturations have dropped at worse to 79, but most the time hover around 88-92, and this is with 3 litres of oxygen supplementation. Ideally he should be at 94 or above on just air. Anything below 92 is a worry. He hates it. He needs humidified O2 to keep his mucous moist so he can cough it up, but this means a mask, and warm wet air. At night we struggle; he falls asleep and pulls off the mask. The alarm goes off. I wake and put it back on. He curses at me. We fall asleep. And repeat. This, along with a ward full of people and machines and endless beeping, equals very little sleep. He has been on O2 24 hours now, and still no sign of improving enough to come off it. 

I have wanted to cry a thousand times. But I only have twice. OK, maybe three. Part of my role here is to be the one he lashes out at when things are this bad. He is polite with the nurses, and for that I am proud. (NB; that is not to say I let him walk all over me, or that he often lashes out, but just that I understand that things are so frustrating for him, it is him going through this, not me, and I am his safe place, so it's a kind of back handed compliment). 

I've stood by the nurses station as 8 or more staff walk around me, me like a mute rabbit in headlights, they avoid all eye contact, all going about their work around me, but never actually acknowledging that I am there. All I need is a sick bowl - but everyone is too busy. I do every thing I possibly can to not take up any more of their time, but the damn sick bowls are in the sluice, locked away from me. The care, when they have the time, is faultless, they just don't have the resource to give the time and care they want to. This is the real state of our NHS. 

The good news from today is that we have a plan; He can drop the nebulised hypertonic saline, as he is coughing too much (I'm quite surprised he didn't produce a whole lung). But double up the DNAse, which helps thin his mucous. Thankfully a chest X-ray ruled out any pneumothorax (collapsed lung). So we can increase the physio, but not at the gym (he is not well enough to leave the ward now)  we'll go back to chest percussion and something called the Bird, which is a big retro looking machine that pushes air into his lungs. We will continue with the IV drugs he is on, awaiting lab results which may show something new, until then, we assume it's a flare up of his usual Pseudo infection. 

Tomorrow will be better. It must be. To all who have called, helped with the girls, sent food or love.... THANK YOU. x 

The 'Bird'. 

Not the best.

Two failed long-line attempts means he needs to put up with cannulas for longer. To insert a long-line, they put in a cannula, and through that thread a long thin wire up his vein, then thread onto the wire a very small tube, and push that up into the vein, and finally remove the wire; Voila, you have a very long thin tube in your vein, which lasts much longer than a normal cannula. Only his tube kept getting stuck at a valve, meaning a small cutting of skin to try and push it up, a fair bit of blood, and a big fat fail. Despite the laughing gas.... this was no laugh. He did not complain and we will try again tomorrow (he is a frickin hero our boy!). 

Physio at the gym was a non-starter; he was pale, clammy and coughing so much, he looked like he might pass out. Lung function was terrible; huge drop. LF is the measure of wellness in CF, but we're assuming today's reading was meaningless, as he was coughing so much, he just wasn't able to do the test well (to think otherwise is too depressing). He is eating very little, and the coughing zaps all of his energy, so he is not up for games. His oxygen blood saturations are too low, and I think might be causing his headaches. He has not been this unwell for a long time. 

Today was not a good day, but Isaac's response to anyone who ever asks him how his day has been is; Not the best. So let's go with that. I like his version better. 

Hoping I'll have better news for you soon. 18.40 on the ward, and we're already in our PJ's. Tonight will be a long night x 

Confinement.

Fours weeks ago today we left the ward, and today we return. Isaac is feeling rotten. Like, cough so much you're sick rotten. Again and again on repeat. His O2 sats are low, he is wheezing, he breathes with grunts, and his sputum is extra icky and green. None of these are good signs. Cannula is now in. IV's tonight. Tests tomorrow... then a plan will be formulated. He has not complained once. It doesn't take us long to get cosy and settle in. 

More soon x 

And I'll tell it and think it and speak it and breathe it.

Isaac is never one exactly keen to go to school. His mornings are mired with nausea and pain way too often, not to mention always being on catch up work from the days he misses. But today was his school sponsored walk, and he wanted to get up early, eager to go. But his chest was audible with crackles before he even entered the room. Cough after cough after cough. Productive enough to get a juicy sample for the lab (dropped off first thing today. Results won't be ready before Monday earliest). Until then, we have to rely on his usual antibiotics, extra physio and Cipro (his most powerful back up anti-bot). Clinic had advised last week to delay Cipro as it is too soon after his IVs, but he is now too poorly to put it off. We will give this a few days, and if no better, take him in. He is feeling so bad, he actually asked to go to hospital (which never happens). But he made it through all 16 miles of the walk. How amazing is that? Battling through with crappy, angry lungs, coughing all the way, he still won his own personal battle. 

CF is all consuming. It affects him in countless, immeasurable ways. Laying awake at night, listening to my boy go through this, is utterly heartbreaking. I can't describe it. I wrap my hands round his chest for physio (we do chest percussion when he is coughing this much, on top of his physio he does with his Aerobika device, as he gets so tired) and I don't just hear his rattle, his wheeze, his crackles, I feel them. 

At times like this, CF is all I can think about. I like to think I do all the worrying so he doesn't have to, but as he gets older, I'm not sure that's always true. 

A stormy autumn.

The kids are back to school, but already Isaac is coming home sick. Yesterday was not a good day. Today, Rosa was sent home after spontaneous vomiting in class too. This time of year is often not good for us. A new round of viruses to pick up and pass round the family. At the moment I'm hopeful that we can stay home and send in samples to the lab, which they grow to show any new or rampant bugs. All being well we stay home and put off CF clinic longer. He has had too many rounds of Cipro (the most powerful oral antibiotic that his bugs are sensitive to) this year to begin another so soon after IVs. Although he has other daily oral and nebuliser antibots, we have to reserve Cipro to occasional use on top of these, else his bugs will fast develop cunning ways to overcome it. He is still waiting on a date for his nasal surgery (which will involve removing CF related polyps he has grown, and widening his airways.... not nice, but very necessary) but his consultant is on the case. It's likely he will have more IVs at the time too, as the surgery and associated aneastetic will leave him open to infection rampage. I don't want to say the 'C' word in September, but I bloody hope it's well before that busy season, and we have him well and home for the holidays. 

The other night, unwell in bed in the early hours, he said 'Why me?'. 

It's times like those where I feel so helpless. 

And so I try and turn that helplessness round and start thinking about my next fundraiser..... core team (you know who you all are!)... anyone up for a skydive? 

This blog and home IV's.

I am often asked why I write this blog, and do I find it cathartic? The answer is absolutely yes, it feels so good to get things down in words, and I am a very open person generally, so happy to share (although of course I keep some things back that are not mine to share). 

I began this blog to raise awareness of Cystic Fibrosis, and Organ Donation. Although 1 in 25 people in the U.K carry the CF gene mutation (unknowingly usually, as carriers are healthy) only 1 in 2500 babies born have CF, and this amounts to around ten thousand people in the U.K. The most common, genetic, life threatening disease is still pretty rare. And increased awareness really does help, not only in raising more funds for research, but also to dispel myths, and reduce the number of crazy questions sufferers deal with. The organ donation part is linked as people with CF make up a large proportion of people on the waiting list for organs. The chances are, at some point, Isaac's lung health will be so low, transplantation will be his best option. Although this does mean swapping one disease, for another in a way (a lifetime of suppressed immune system and other drugs, along with their own special side effects). Currently half of those people on the waiting list for new lungs die waiting. 

The one thing I never wanted this blog to be about was pity, or to attract sympathy. I really hope that it comes across in the way I intend - to share, inform and give a glimpse into family life affected by a serious genetic disease, in a positive way, while still being very real. One thing to emphasise is that the treatment regime for CF is to treat infections very aggressively. This is why Isaac takes daily antibiotics, and occasionally has these courses of high dose (treatment doses in CF are much higher than for other people) IV antibiotics, which kick some serious bug butt. So whilst the treatments sound, and really are, pretty full on, this is all aimed at keeping him well, rather than because he is currently very un-well. As I am often told, you'd never know Isaac has CF to look at him. 

We talk very openly at home about CF, we never wanted to make Isaac feel it was something he should be secretive about, and he knows he can ask us anything freely, and without worrying about upsetting us. Anouk and Rosa talk quite proudly about their brothers CF, and that he has medicines into the 'wiggly' in his arm. They all understand that the many treatments that Isaac does, very much part of our everyday life, are doing just that; keeping him well, as such, we never refer to CF as being a sickness (although you will regularly find us all agreeing; CF sucks!). 

Some observations about home IV's; 

We very much prefer home IV's to staying in hospital (this study supports the idea too). It is no doubt easier for our family as a whole, and protects Isaac from the risk of picking up extra bugs in hospital. And whilst the physiotherapists do an amazing job, trying to increase his exercise and clear his chest, we can do more at home. He can't swim or do contact sports with a line in, but he can do most other things. 

If we do this more often (many kids with CF have regular courses of IV's every 12 weeks, rather than adhoc as Isaac does, maybe one or two times a year) we will need another blue bin. The amount of discarded packaging is immense! 

I am happy and willing to mix up and administer the IV drugs at home, which enable Isaac to spend less time in hospital. That said, I would be lying if I said it was easy, and I always felt relaxed doing it. Mixing up the drugs to give him includes many vials of drugs, various mixers, sterile wipes, needles, bungs, syringes, and making sure various parts don't ever make contact with other parts.... in hospital each dose drawn up by one nurse has to be checked and signed off by another; the patient, the dose, the use-by dates, whereas at home it's just me (thankfully with just a single patient mind). After all, I am pushing these powerful drugs up a line directly into his bloodstream. Problems can include spontaneous anaphylaxis, infection and the vein popping and the drugs going into his tissue instead of his blood. Scary stuff. 

My son is amazing. 

And so, we have come to the end of yet another course of IV's (have lost count how many he has had now), feeling pretty lucky. A single long-line, which came out today, has lasted the whole time; He's had very few side effects; We got to spend half the time at home, rather than the full two weeks in hospital; and most of all, he is feeling better. Plus I am the reigning queen of our new card game, Exploding Kittens. 

Huge thank you's to our parents for all their help, our visitors in hospital, Dan for surviving the long weekend on the ward while I got to spend some much needed time with our girls, and for all your lovely comments on FB. Isaac 1 - 0 CF x 

Home.

We are home! Can't tell you how happy we are. Discharge day is always the hardest for us; once you have your hopes up, the delays in actually getting out the door become mega frustrating. No one is to blame for this (but Jeremy Cunt certainly hasn't helped the situation), so you don't get mad at anyone, just at the situation. To get out, we need a discharge letter, drugs from pharmacy, and medical equipment in order for me to do his IV's at home for the next week. This took eleven hours. We arrived home more exhausted, both mentally and physically, than when we went in. 

Home IV's on top of all his usual treatments is a pretty full in schedule, but we are so thankful to be home, we don't care. 

The ward at night. 

Our home IV station, and a card from his sister. 

One evenings medications. The girls still call his long line a wiggly (just as he used to). 

The empties after making up IV's. 

The final IV doses for the night all made up, gloved and plastic aproned, administered by moi! 

Part six and seven.

Sorry for the lack of updates; we've been enjoying ourselves too much. Due to the bank holiday weekend, and there being an absence of doctors, Isaac was able to come home for a few hours each day. Some home time makes all the difference. We are now back on the ward, in our third bed of the week, and in a much nicer room, with huge windows overlooking the garden. This makes me very happy. I feel like we have room to breathe. 

Tomorrow we will stay here to have lots more tests, and results, in the hope that they will agree to let us go home on IV's for the next week. To get home, I need to demonstrate that I can mix up and administer the drugs  (uber sterile, gloved and gowned up) three times. One done tonight, another later, and then again at 6am. Although his long-line has been getting stiff to push the drugs through, it seemed OK tonight, so we just have to hope it lasts the next week. They always aim for a course of 14 days with IV antibiotics, but we've previously done anything between 10 and 21, due to either the line failing early, or him still being unwell after two weeks. 

He is still cheerful and is coughing less. The not so good news is that his O2 sats are very low after exercise (moderate hypoxia), I need to speak to his doctors further about this, to understand what this means. Really hoping for some better news tomorrow. Had a very long and lovely hug from my dear Mum earlier. We both needed that. 

The view from our room. See that door down the very very very far end? That's where I have to go for my cup of tea. Helps pass the time x

Part five.

Isaac came home today! At least for a few hours between physio and IV's. He got to see some of his friends and bounce around on the trampoline for a while (having an IV line in doesn't stop him doing much!) and we got to be home together as a family for the first time in two weeks (as I was travelling for work before we went in to hospital). 

Its been a great day, but watching his friends going off to the park while he had to return to the ward was another teary moment, for me. As always Isaac is smiling, and I couldn't be prouder. 

Part four.

CF, the gift that never stops giving....Results we've had back this week; 

His bone density scans came back as low. Meaning he is more at risk of osteoporosis and general breakages. This despite being on the maximum vitamin and calcium supplements he can be. We need to increase weight bearing exercises. 

His lung function has dropped. But this isn't altogether surprising, this early on IV's. 

Still waiting for blood and sputum lab results. I'm worried about these. 

Some concern has been raised about how many good veins he might have left, given the number of long/PICC lines he has had in the past, and a portacath been mentioned again. These are permanent implanted IV devices that are inserted into the chest (or arm) in surgery, that should last many years, and can be easily accessed every time he needs IV's. We've been pretty lucky to last without one all this time, purely because he is very good at having lines inserted and has no fear of needles (mostly due to his love of laughing gas - did I ever tell you, Isaac means 'laughing one' - so apt!). There are only so many places on a body they can site ports, before they run out of veins they can use too, so in some ways, the longer he can put this off for, the better, but it may be happening sooner rather than later at this rate. 

Today I have been at home with the girly ones, watching Flicka movies and making slime (their latest fads). Isaac is in good spirits still. I miss our family all being together under one roof, but I'm thankful that my boy is still smiling, to be here for now, and that everything is going well. Thank you for all the lovely messages x 

Part three.

Some other hospital observations; The parents room always has that slightly unlived in smell, and includes shared mugs that look clean, but that you will always pre-wash before using. Food is labelled in the fridge, which smells despite it being checked and emptied of old food weekly. Although Isaac is fed here, I am not. The hot food on the concourse is so expensive, I live on M&S salads and posh microwave meals. Whatever time of year, the ward is always hot. 

You can't help but parent watch in here. You can't help but overhear when all at divides you is a curtain. When others express sympathy to me about our incarcerations in hospital (usually about two/three times a year right now) I always explain how humbling hospital stays can be. Most of the time, we are in hospital to keep Isaac well, which is quite different to coming in to make you well, or for respite care, or worse, end of life care. 

As well as some heart-aching stories of support and love, and many many loving and incredible parents, you also see other parents using nurses as child-care, leaving for  hours or even days at a time. You see young parents not coping. You see quiet toddlers, seemingly afraid to cry. You see couples arguing. You see children with carers, whose parents never visit. You see distraught families.  

Being on the ward also reminds me of Isaac being young. We spent a lot of his first year in hospital, as he caught Bronchiolitis twice. It wasn't until he was much older that Dan and I would share the nights on the ward. As a baby it wasn't an option because I was breastfeeding. Although I feel almost traumatised by some of these memories (the failed PICC or long lines, that took hours to get in while he screamed, only to fail again later that day... the oxygen and still his O2 saturations dropping below 90...). I also have lovely memories of rocking him to sleep in the big wooden rocking chair, him speeding around the corridors in a baby walker, giggling all the way as he dipped in and out of rooms (long hospital corridors rock for vehicles on wheels!). 

Tonight Dan and I have swapped over, so I can have a much needed night with the girls. It's so lovely being home, with them, on our own sofa, with Obie  sitting on my feet. So why does it feel so wrong? 

Part two.

Tea. Lots of eye rubbing. Attempt to tame bed hair. Nebuliser. Physio. Oral meds. Shower. Breakfast. IV's. Nebuliser. Gym and physio. Nebuliser. Lunch. Oral meds. Nebuliser. Visitors arrive (thank you so much Bon, Sonny and Asher). Gym and physio. Visitors leave. Dinner. Nebuliser. IV's. Bloods. Dan and the girls arrive (hell, I have missed them). IV's. Nebuliser. Oral meds. Dan and girls leave (there are tears). IV's. Bed. Babies crying. Machines beeping. Finally sleep. 3am IV's.... 

It has mostly been a good day. Isaac is in good spirits, and his friends visiting cheered him up no end. He struggled at the gym (breathless, coughing) but it's normal to feel worse on IV's before you start to feel better. His tolerance and humour amaze me always. Tomorrow night Dan and I will swap over, so I can have some much needed time with Anouk and Rosa too. 

My main problem is that the Toblerone remains wrapped and elusive. It's killing me. What kind of hell is this? 

Our hospital garden. My some time sanctuary; 

Hospital diary part 1.

I'm going to try and write a daily update of this hospital admission, to give you an idea of hospital life with a handsome, lovable, funny, but often grumpy teen. 

Day one: Today started with the usual will they or won't they question over availability of a hospital bed. When you have your bags packed and mind set on going in, it's understandable but frustrating when they don't have room. Today we are lucky, and have a bed by lunchtime. 

Arrive to find that it is the WORST BED EVER. The middle bed of a 6 bed ward. This means we are surrounded by curtains. Even a window view of the opposite wall would be better. The main problem is we have only a bed, a fold down bed for me, and one small cabinet for our stuff. This is impossible with the amount of medical equipment we have with us. While we are in, I still need to do his usual treatments, which include five nebulisers a day, which means bringing two different machines and all the paraphanalia these involve. We're told we will be moved as soon as something bigger is available, but it's still likely to be on a mixed ward rather than a side room. 

Worse still, there is another kid with CF on the ward, and he's an older child too. This means we can't go in the teenagers room, due to cross infection risks between people with CF. The kind of opportunistic little bugs which love the CF lung are not the kind that usually affect other healthy people. But between CFers, these bugs would spread rapidly given half the chance. The teenagers room was our life line last time we were in. He's too old for the kids playroom, so this leaves us only the garden. This only increases our feeling of claustrophobia..... and it's only day one. 

After a few hours, the doctor makes it up from clinic and we have his long line inserted. This is simply a cannula with a longer tube which threads up his vein from his elbow towards his shoulder, to administer his antibiotics directly into his blood (intravenous). Thankfully this time it goes in first time. It still takes about 25 minutes and he uses entinox (laughing gas) throughout. Once he is all stuck down and bandaged up, I guide the drunken teen back to his bed. 

An hour or so after this, he has his first IVs, and we spend another hour or so doing his usual stuff. 

Move beds, to the corner of the same room. At least we have room now to do his drugs properly. We have a couple of toddlers and a baby in the room, and a young girl whose Mum has gone home. It will be a long night for us all. I miss my girls, Dan, Obie and my bed. 

I fall sleep about 10pm, still jet lagged, and mildly annoyed that he hasn't opened his Toblerone so I can't possibly steal a chunk undetected. 

Wake up at midnight to find that he's still on his laptop. Oops. 

Nurse comes at 3am to do his second lot of IVs but we both sleep through it. Pretty good start all in all. 

Screaming.

I have just walked sufficiently far down the fen with Obie (the handsome dog) in order to scream out loud. 

Clinic today and it turns out we're heading back into hospital for a stay. I say back in, but to be fair, we have had a good stint out, so shouldn't complain. We have sent in a few more sputum samples than usual lately, as his cough has been worse (the highlight of our lovely CF nurses day must be opening the post to a juicy pot of mucous for the lab). The results show that despite two long courses of extra antibiotics (Cipro), his Pseudo infection is rampant, and has been joined by another bug for good measure. The decision was made before we'd even been reviewed; Two week course of IV antibiotics with a whole heap of physio thrown in for good measure. 

It's not unusual for people with CF to go in for IV antibiotics as a kind of 'tune up' to dampen down the infections in their lungs, regardless of how symptomatic they are. Isaac, on the otherhand, has managed up to now on adhoc courses (usually twice a year, ish) when he is less well, his lung function drops, or the lab results show rampant infection, but it feels like we might be heading towards a more regular tune up, typically every three months. 

The extra stress right now is that I am due to fly to Mexico City in two days time for work. We have agreed to wait until I return to go in. Our consultant has reassured me that this is in no way putting Isaac at risk. His lung function is stable, and he can have more Cipro for now, which we know holds the infection at bay. The problem is that it runs rampage in his lungs every time the Cipro ends - which we hope the IVs will put an end to. For now at least. 

To add to this, his surgery on his nose has been delayed - despite asking to go on a cancellation list (we live so locally to the hospital and can run him in anytime) they failed to actually do this, and it turns out the waiting list is 5-6 months, and he is at the bottom. He has polyps and massive inflammation, meaning he can hardly breathe through his nose at all, and is most likely infected there too, which in turn may be reinfecting his lungs. Despite this, he was given no priority on the list. Thankfully today, our consultant will write to explain why this is urgent, and we are to write ourselves and complain, which will allow this issue get to the powers that be, and she is confident that we can get bumped up the list. I'm sorry, but... child...nose... lungs.... life threatening condition.... it's not hard to figure out. 

I have yet to tell my little girls that not only will they miss me for a week for work, but then I'll be heading straight to the ward with Isaac. Another heartbreak. 

And so I scream. And cry. And then feel a bit better....

Isaac on the otherhand is absolutely fine about going in; Looking forward to the laughing gas he will get to have his IV line inserted; the ward chef at his beck and call; fun in the gym; and extra time gaming as the drugs infuse. His only gripe is that it will be the last two weeks of his school holidays, rather than missing school. Gotta love that kid. How can I complain when he doesn't? 

This Klee pretty much illustrates how I feel right now (especially as I was hit round the back of the head quite ferociously playing dodgeball at a trampoline park yesterday.... did not feel funny at the time, frickin kids!). Goodnight all x 

Disinformation annoyance.

This kind of shnizzle really annoys me. One study, widely publisised on the news last week, which means many will now cut short courses of antibiotics as soon as they start to feel better, now believing they might be doing us all a favour. 

Standard antibiotic treatment calls for taking the medications for a definite period – even if symptoms clear up. The sustained dosage is needed to make sure that all the bacteria are killed. However, when treatment is stopped early, some bacteria survive and mutate into super bugs with enhanced resistance to the antibiotic. This is why we must always complete prescribed treatment, even if symptoms clear up. Otherwise not only do we avoid killing present bugs, we may be helping stimulate the development of drug-resistant bacteria. So fine, it's good that we recognise that an 8 stone granny with a toe infection might not need the same dose as a 16 stone builder with the same - but this kind of reporting does not illustrate that point well, it just gives protagonistic headlines which will speak to many who won't read the small print, and will believe it. 

Sorry, I know I have blogged about this many times. But the cumulative effect of our misuse and overuse of these drugs is undermining a once-powerful treatment tool. Today, when you go to the hospital with a serious infection, there’s no certainty that it can be controlled - Particularly with vulnerable patients – a person with CF, a child, an elderly person or someone with a compromised immune system. 

I am no expert. Maybe I am wrong. But nor are these journalists reporting on a single study. Please follow your doctors advice. And likewise, if you are eligible for a flu jab this autumn, remember that it's not just for you, it helps protect the less well around you too. 

Big love x 

The grumpy but handsome freckle teen ❤️

Going away.

I am going to Mexico City for a week fairly soon. I've had the joy of travelling a little for work over the last 14 years (I started the job thinking I would stay a couple of years, and never left, the people are too lovely!) maybe once every couple of years, but more often in the last few years. Visiting printers and our other publishing offices around the world. As someone who never went travelling after uni and regretted it, it's a wonderful opportunity to see the wonderful sights of the world, and work in other cultures. 

But the idea of a week long trip, to so far away would have filled me with fear when Isaac was younger. To in no way belittle Dan's role as a parent (he is a fantastic Dad), when you're young and poorly, sometime you just want Mum. I would worry no end that he would get sick while I was away and I wouldn't be there for him, not to mention the cost to the company if I had to suddenly come home. I had to pull out of a trip to Milan the day before we flew once. But now... things do seem easier. 

There is nothing harder than your child being in pain, unwell, or symptomatic without knowing why when they can't call and tell you how they feel. There is something very special about being the one to wrap your arms around your kid and know that they feel somewhat better just because it's you. There is something very intuitive about a Mum and child, especially when they're sick; I can feel and hear the difference between normal cough and a crackle coming from his lower right lobe. I would often wake at night when he was little, knowing he needed me before even he did. 

But now, thanks to a wonderfully supportive family, Skype, and a fantastic kid who is happy for me to go away, and can tell me exactly how he feels on the phone, I can go away in peace and enjoy my adventure...

OK, admittedly I WILL worry, but then I always do. But only a little more than usual from afar. Frida Kahlo Museum and Teotihuacan Pyramids - here I come! 

I hope you have wonderful travels too x 

Antibiotics will not cure viruses!

"The increasing prevalence of bacteria that are resistant to antibiotics is a potential problem for everyone. However, for people with cystic fibrosis (CF) it is a matter of life and death. Long-term and acute bacterial infections cause damage to the lungs of people with CF, resulting in gradual respiratory failure and the eventual need for a lung transplant, or even death. Antibiotics are essential for fighting these infections, preventing or delaying damage and prolonging survival. Over the coming years it is essential that antibiotics are used appropriately and with care to reduce the number of opportunities for bacteria to develop resistance.

There needs to be a global reduction in the use of antibiotics. They are frequently used in agriculture, and are often prescribed for conditions that are not treatable with antibiotic drugs. As understanding of the problem increases, steps need to be taken to reduce these practices. If you don’t have cystic fibrosis, you can help by not asking your doctor to prescribe antibiotics for conditions for which they won’t work, such as flu or the common cold."

I have blogged about this quite passionately before here. Please spread awareness that insisting on antibiotics for what may only be a virus puts others (who really need them) at risk. 

Have a lovely picture to brighten up a more negative note x 

Home with the boy wonder.

Isaac came home from camp full of stories of fun, late nights, fresh air and new friends. Just what we wanted for him. Unfortunately, he also came home full of chesty cough. We heard later that the canvas tents they stayed in were damp and may have been mouldy. The worst kind of environment for a kid with lung problems. That said, he was on reduced treatment while away, to avoid taking two nebuliser machines (which require mains power, sterilising of equipment, and an hour or so to complete) so whether the chestiness is due to the dampness or just doing less treatments (all though he was also on added Ciprofloxacin) we can't say. A week home and his chest is much clearer, and he made it through his last week of school without missing a day, despite also being sick on a couple of mornings. Things are looking up. 

My dad (THE most generous man to ever live) has a caravan at the coast, which we all visit often. It's a family and friends site, strictly no renting out, in a beautiful woody field on a cliff edge, not far from Southwold. It's a far cry from holiday rental sites, where the vans are packed in, all white picket fences. It's surrounded by woods, the sea, loads of green space, and we're beginning to know our neighbours. It's like a home from home - just way more relaxing.  This weekend Dan has taken the girls down with a friend, so Isaac, Obie and I are home alone. A time to bond, I thought. And then I remembered that he's strictly teeny these days. His idea of us spending a weekend together means him playing PS4 and me reading my book in the garden. This might do for tonight, but I'll force myself on him tomorrow, hopefully by kicking some serious Isey butt at pool (that said.... he is starting to get pretty good... ). To do anything together I have to remind him of the IRL (in real life) way in which some people still converse. Imagine! 

School is out, and I'm only working three days a week over the holidays. Lots of long weekends to look forward to, both at the caravan with friends and family, and home, which I need, and which Isaac really needs. First year of secondary school done. Phew. 

Sending big love out to my cousin, who will also have a son given a shitty hand in the genetic lottery of life - we're thinking of you Sian, and wish you all love. 

And also to baby Ned, who should be putting in an appearance this week - happy birth-day - we can't wait to meet you. 

Happy holidays all x