And so today, my world, it smiles.

Today, I returned to work. Not only had my lovely work friends organised a cake sale, to raise funds for the CF Trust, but they had created a 'Get Better Box' for Isaac and all the family - including vouchers (massage for me, money for Isaac, and cinema for the girls) and a huge array of games and goodies.

As well as homemade food deliveries from our friends Gem, Jin, and Lizzie; the other day Ju and Jess sent a whole box of stuff for the kids, gin and a luscious fish pie; Other friends have had us over and spoilt us (love you Fountains); Isaac's school friends and staff have sent chocolates and costa vouchers; We've had cards and messages from people we haven't seen in ages; and people are sharing my blog to help raise CF and organ donation Awareness. 

It's all quite.... overwhelming, in a wonderful way. I held it together at work all day, not a single tear, but hell, they made it hard for me.... Thank you all so much, you crazy, wonderful, amazing people! 

Better still, Isaac continues to recover, and managed a part day at school today, the first time in a month. No more test results yet. We're just trying to enjoy being home together while we can. Big love x 

Normality: noun; the condition of being normal; the state of being usual, typical, or expected.

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