Escapism and holidays

We all do this, don't we? Use one thing in our lives to distract from the other, scarier shit. The papers always like to talk about women 'having it all'. Either not being able to, or some celebrity showing off that they can and do. I work part time, in Publishing, which I love. I enjoy the work, and really enjoy being with the great people I work with. It is my escape. Since becoming a Mum, I dropped to three days a week, but this year I've gone up to four days (for various reasons). And they are long old days.... I am up before 6am doing physio, nebulisers, meds, and because I do the morning school run, I'm not usually home until around 7pm, for bedtimes. I know a lot of people have longer days - but juggling it all.... it is a struggle sometimes. I either feel like I'm doing well at work, or home, but rarely both. Torn is the best expression of how I feel, and I am guessing how best most working mothers would describe themselves. You either have a great meeting at work, only to realise after that you had baby snot all over your shirt the whole time, or a great morning reading with the kids, only to get to work and realise you have their library book, and they have your tomato salad. 

By working four days a week, I can usually manage all the hospital appointments by either swapping the days I work, or taking annual leave. Next week he is going in twice, so it's a bit of both. I can't miss his appointments - my coping mechanisms involve me knowing as much as I can about him and his CF, the unknown terrifies me, and not knowing exactly what his doctors have said would drive me crazy. On occasions when we have stayed in and I miss the morning doctors rounds while in the shower, Dans hazy reports usually have me asking all day 'but how did he say this' or 'was she smiling when she said that' driving him crazy too. 

I will work for as long as I can keep up this juggling act, and if and when I can't anymore, I'll give it up - which in itself will create a new juggling act with both money and maybe my sanity. 

We have enjoyed a week of laughter away in Wales with fab friends and his cough is much improved, but not altogether gone. It's been a fantastic week of swimming, surfing, beach action (dad's new nick name; Dan-Van-Dam after his expertise at beach dam building), Cipro sunburn (despite all the sunblock and very little actual sun) and non stop playing with his best friends. Really hoping all this exercise, salt air and Cipro have helped his lung function improve for when we go in on Tuesday, otherwise he'll need more treatment. 

So annoyed at myself. I managed to pack everything except his sodium chloride, which meant we had nebuliser drugs, but nothing to make them up with. To have a doctor prescribe him this involved Dan going to a pharmacy, an A&E department, being turned away, but with an out of hours GP's number, and finally a second visit to the pharmacy. In 9 years it's only the second time I've ever forgotten anything, and what a polava it causes, especially frustrating when it is essentially some SALT WATER! 

Keeping his weight up is an ongoing issue - in CF good weight and lung function are known to be positively correlated, and his drop in both lately is a concern. He needs to consume around 50% more calories than you would normally at his age just to keep up, so when infections affect his appetite, the weight falls off him very quickly. His appetite is still uncharacteristically low (for him anyway, he usually eats like a horse on steroids). Big thanks to Mrs F for filling him up with yummy pancakes and homemade hot chocolates on holiday. 

Two new things recently of concern; 

1; he was spotted throwing away some tablets (his least favourite) when camping. What else might we have missed? Back to supervising everything again. 

2; he showed awareness and concern for the numbers he was reaching on his tests at clinic. This is good I guess, but I'm just sad that he has to, and to know that he does worry about things. 

So on one hand he is testing his boundaries and cutting corners, but at the same time, he is worried about his health. How to get that balance between making him realise that his treatments are very important without worrying him is really hard. 

We watched 'Kids with cameras' on TV last week, which featured a kid with CF. He was quite unwell with his CF (30% lung function) and both the sound of his cough, and his rounded shoulder posture were sadly familiar thing to us. On one hand I am so uber positive about our future with CF, but on the other, I worry that maybe I am being naive - is my head in the clouds or the sand? 

Goodnight all, hope you have had a great summer too x 

*I should add, I could not cope without the amazing support I have from my family, in particular my mum and stepdad, who have always had the kids while I work, and my lovely husband who works much harder than I do. Love you D.V.D x 

The big canoe challenge

They kick off tomorrow! He is not altogether well, but we think he is improving. We'll take each day as it comes, but he is a little soldier our boy, not much will hold him back. Fingers crossed the big guns are doing their magic. 

The trip will take 3 days, numerous snacks, one fantastic Grandad who is ferrying the camping gear around and setting up camp, some big cooked breakfasts, some eager visiting sisters, a small amount of beer or wine before bed, quite a few fantastic supporters who are either waving on route or getting in boats themselves, and one frazzled mum who will no doubt get lost in the car trying to follow them. Thank you so much to everyone who is helping us do this, it is a complete team effort. 

Please, if you can sponsor them, click Here and then have a great day with that warm and fuzzy feeling that YOU have made a difference x 

Pictures to follow. 

New model army

Today we had an emergency appointment with our favourite consultant. We are so lucky, we have 3 amazing consultants on the team, and have a long relationship with each, and admire them all in many different ways. Anyway, I digress. His cough isn't improving at all, so we had to go in. He has started to feel pretty grotty now too, and just lieing on the sofa his breathing sounds like the crackling of an open fire. 

The bad news was that his lung function (the main measure of wellness in CF) is down 15% from last clinic - and it wasn't great then. He really struggled doing the tests too, but tried so hard (love him so much). Blowing into a machine both forcefully and for as long as possible induces lots of coughing, so the graphs come out looking like the outline of the Alps. He's also lost weight, which they are concerned about. Good news is the lab results are coming back clear so far, but that doesn't mean there isn't infection down there, only that the sputum he produced for that sample, from that cough, didn't contain any, but hopefully it goes some way to saying there is no heavy growth yet (more tests today, so wait on those results now). 

The plan is to try a new oral antibiotic, Cipro, which is the dude of all oral antibiotics for 3 weeks (problematic side effect; it makes him super sensitive to sun, so almost always looks burnt, even in winter, so bring on the red face). If he is no better (or worse) by week 1, we go back in, start IV's immediately. If he is a bit better by week 1 we carry on with the Cipro, but if not completely better after week 2 we go back and start IV's. If he gets better, just complete the 3 weeks of Cipro, Bobs your uncle. 

The other change, and the one he is very unhappy about, is swapping back from Colobreathe to Promixin. He was on Promixin for years until just a few months ago. It is a twice daily nebuliser, which usually takes him about 20 minutes a pop. We were very excited when Colebreathe was licensed as this is a dry powder inhaler; just breathe in, hold and go. But when we finally received our new toy, it wasn't quite as great as we had hoped. It's REALLY hard for him to hold down, and makes him cough and splutter all over the place. He has tried so very hard, because we all wanted this to work so much (the mixing up and refrigeration of neb drugs, and sterilising the parts, and problems with the machine itself all make nebulisers very frustrating at times, and make things like sleepovers much more complicated). So now, along with the DNase he nebulises daily, he is back to 3 nebs a day. So potentially an hour day (he could do them in less time if he focused more on his breathing, but he chooses not to, sadly leading to lots of nagging on our part). Sadly he blames me for this decision, but really it was a joint decision lead by his consultant and we have to put his health above convenience. 

So, not altogether great, but another chance to kick bug butt before we cave into the last resort - IV's. Isaac and I have an ongoing analogy on everything to do with his chest infections; 

The bugs have set up a small camp in his lungs. They have recently allowed further visitors in and expended the site without permission, they litter all over the place and are generally a dirty smelly bunch. The last lot of antibiotics were arming his white blood cell army with handguns. The Cipro arms them with machine guns. If that doesn't kick them off the site, we will send in the heavy artillery - the IV army. 

We live in this 'will we or won't we be going in for IVs' uncertainty not infrequently, and we usually manage at home, so hopefully the Cipro will be enough again this time. 

In other news; we had flash floods last week and the kids were able to canoe down our road. Very cool; The boys have just 3 days to go until the Canoe to the Coast challenge (you can still sponsor them, see blog below for link); Rosa's (the toddler, must stop calling her baby) new phrase is 'shub up Mama, luff youuuu' (as she shoves me over in bed), melty heart!; We are soon off to Wales with the lovely F's. Lots to stay well for. Well wishes please (and thank you for all the lovely comments people have sent on FB). 

Have a great day x 

Invisible disease

Over the last couple of weeks we have enjoyed the start of the school holidays by going out loads. We have spent lots of time with lovely friends, been to parks, blackberry picking, bike rides, swimming, BBQ's, he's been to a football party this weekend (thank you L, you are a great friend). Once over the tonsillitis, he was up and about and lots of people have said how great it is to see him looking so well. In fact, we always have comments from people about how well he looks - it's great. 

However, all is not always well. His CF team list him as 'colonised with pseudomonas'. This is a bug which adores the CF lung, and would not affect other healthy people. This means he lives with this bug in his lungs all the time. But at times it affects him only a little. He inhales antibiotics and takes others by mouth which keep it at bay. Occasionally the infection flares up, and this is called a exacerbation. 

As well as the Pseudo, he grows some other bugs from time to time, and will also catch as many viral bugs as we all do. Viruses are not treatable, and leave less damage in their paths, but they do make him more susceptible to secondary bacterial infections - they help prime his lungs ready for an invasion. We hope that if someone has any kind of chesty cough they have the forethought to avoid contact with us to limit this risk, but understand that it's not always possible, especially with kids (if they had a known bacterial chest infection, then I am sure they would avoid us like the plague).  

I guess my point is, having a chest infection when you have CF is not the same as having a chest infection when you are healthy. He can sometimes present without fever, without fatigue, without achy bones, but with a nasty old cough. This might sound great, at least he feels well much of the time, but we can't ignore even the slightest cough as this invisible enemy is down in his beautiful pink lungs, setting up camp, and causing irreversible damage, inflammation and scarring. 

So although he is feeling much better, running round having fun in the paddling pool, we will worry until all the test results come back clear and the cough subsides completely. With physio today he was coughing and coughing and coughing. It is heartbreaking. In the night I even heard him going cough cough huff, which is what he is taught to do in clinic (a huff clears sputum more effectively than a cough) - He is learning how to better manage his cough on his own, I'm just so sad that he has to. I'm pretty sure my cough radar is more acute than most, you might hear an occasional cough, I hear every stinky one like a poke in the eye. 

We know that he is on the full whack of medication that they can throw at him orally and inhaled - if the cough is no better, or the lab results show that he is growing something that is not sensitive to the drugs he is already on, or in fact worse, it is, but they aren't working, then he'll need more IV antibiotics, which means going in to hospital. In the summer holidays. That will suck.

So, this is why we worry, and why when you might say he looks great, that's lovely, thank you very much, but we can't always share your joy entirely. Come lie in bed next to him at nights, he gives a lovely hug but you won't get much sleep. 

Goodnight all. 

No better. No worse.

He is still coughing. So we await the results from the lab, and in the meantime add a fourth antibiotic to his daily count in the hope that this one does the trick. He's feeling better in himself despite the coughing, and is still up and about. Clinic soon if no better though. He can't carry on like this, as untreated infections, if he has one, cause long term damage in his lungs. I hope to report back with better news soon.

He was in the local paper the other day which you can read Here.

Good night x

A few days in pictures

Started and (almost) finished a project that we've been meaning to do for years (just needs grouting). The kids all wrote their own names. It was a whole family project with Dan building the patio around us. 

Tonsillitis is slightly better, so we head on a 10m bike ride. Anouk is only 5 and new to being allowed to ride on pavements....she did so well. Stopped for a sweetie break on the way home by the lakes. Beautiful. Stayed up late in the garden afterwards with friends. Perfect end to a great day. 

Headed to the Science Museum, just me and the big two. They started out arguing as usual, but ended up carrying each other round, and sharing a seat on the tube. There is hope for them getting on better this holidays! Love love love. 

His tonsillitis is much better, although he still has that typical tonsillitis voice. But his chest is worse. It's the usual way, I guess if his immune system is busy fighting something new, it takes the brakes off the chest infections which are waiting for their opportunity to thrive. Nasty bugs. Hoping that we're not going to clinic early this week. Well wishes please!