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 ❤️