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We are home. 

Happy Father's Day men folk x 

Hospital survival guide

While we are here, and it's fresh in my mind, here is my official hospital survival guide, should you ever be so unlucky to need it; 

Bring flip flops or slippers. Wearing shoes on the ward feels, just wrong. Pyjamas and shoes? Not a good look, and you don't want to be venturing in toilets bare foot. 

Take your own pillow/blanket. Home comforts to make things feel a lot less cold and sterile. Plus hospital pillows are plastic coated, the crinkley sound as you roll over just reminds you of the thousands of other people who have once dribbled on them too. 

Books, magazines, games, cards. I may remind you here that every hour in the real world, is three hours in hospitaland. You will need entertainment. And at least here at Addenbrookes, the kids wards still have no Wifi. *** note to NHS, this is probably the single biggest thing you could do to improve the hospital experience for kids and parents alike *** No need for toys, the playrooms are great. 

Bring money. We rejoiced when M&S food opened on our concourse, but between that and Costa hot chocolates (complete with cream and marshmallow) it is haemoraging our bank balance. Not to mention the parking and TV/films (... £10 for 24 hours). 

CF families, I suggest you bring all your own medicines from home, everything. You know all the doses, routines, cleaning and preparation required, and just explaining that to the nurses would take as long as doing it. As fantastic as nurses are, if they do all the normal drugs as well, everything will be late, in the wrong order, or somehow, just-not-quite-right. Plus, as parents on the ward, we have jobs too. The nurses have enough to do. 

Invite visitors. Make sure you ask for help, most people (I hope) are happy to be asked. Grown up company for you, but the kids want kids, so ask their best friends/cousins. 

*** Note to visitors *** No need to bring anything, just come ready to play, he wants to be distracted and Mum wants a break from getting her butt kicked at Mario Kart. But don't stay too late - no one sleeps well on the ward, so we need our early nights. Also, best time to come is early evening, the days are mostly filled with doing or waiting for the next treatment and visits from numerous doctors and what feels like hundreds of medical students. If you come in the day, you risk not finding us as we're out at X-ray, lung function, ultrasound..... 

Treat yourself to nice pyjamas. Almost worth having a 'Sunday best' pair just for coming in, if you come in as often as we do. The consultant that you see all the time in clinic is soon going to see you in your nightwear. Would feel a bit odd in your old grey granny pants and your husbands old t-shirt. 

Use the parents kitchen. I used to live on sandwiches and rubbish when Isaac was little on the ward. Now we have M&S I have microwave spinach and ricotta cannelloni, or have soups and salads. Much more fulfilling. Also lots and lots of tea. Helps pass the time. Tea helps everything. 

And a word of warning. Prepare to manage in hospital, but have a meltdown the day after you get home. Happens to me every time. You hold it together when you need to, but it's got to come out sometime. 

Back in hospital

We are in again. This time on the baby ward, not because he has shrunk, but as that was the only ward with a cubicle available. He needs privacy as this time it is tummy related.... CF friends will understand. DIOS hell.

I am feeling tearful as we spent a lot of our first year here together. Many memories of C3.

Hoping this one will be a briefer visit. More soon x 

Third time....

Jayne has had two calls now. You can read about the second Here.

This is no bog standard, call from your Mum, or the local neighbourhood watch to tell you about the latest stolen hanging basket. This is, we may have new lungs for you, so you can like, BREATHE, and be well, and get one with your life with your lovely family.

Can you imagine? Each time, it's been a no-go. This time, the lungs were no good (but thank you donor for at least offering).

Having known others on the waiting list for new lungs, this is; to-be-expected-but-still-bloody-annoying. I know people who have moaned more when their dentist has cancelled an appointment. I know people with CF who have had almost a dozen calls like this before getting new lungs. 

I'll give the lovely, funny, wonderful Jayne a little twist on a saying she will almost definitely be hearing right now; 'third time fucky?'. 

Love you funny lady. It will happen. I can feel it in me creaky old bones x x x 

Our roundabout.

Our week.

1; Wakes up with tummy ache. Pain. Folded over. Vomits. Eats. Feels better. School. 

2; Wakes up with tummy ache. On the loo all morning. Can't eat. Braves school. 

3; Wakes up with tummy ache. I vow to call dietician. Doctor. Start the dreaded 'food diary'. Is it not enough Creon. Too much Creon? Looks pale and sad walking into school. 

4; Wakes up, feels fine! Panic over. 

5; Wakes up, tummy distended. Movicol, Movicol, Movicol. DIOS again? Can't leave toilet. No school. 

6; Wakes up, tummy ache. Vomits. Bug at school. Is it tummy bug? Or side effect of new meds? Or not enough Creon? Too much Creon? Last nights curry? 

7; Wakes up, feels fine! Panic over. 

And repeat. 

Feeling helpless.