A&E at Easter

Yesterday found us back in hospital again so I just wanted to tell everyone that Gwennie is doing ok, enjoying some ‘wafting of oxygen’. Mainly I wanted to share a little bit of what happened today (because who doesn’t love a good dit about the NHS).

So Gwennie has lung disease & after her last ‘episode’ is somewhat more fragile. Yesterday morning (after a long night of coughing & higher rates of breathing) I called 111 to get Gwennie an out of hours Doctors appointment. Lovely person on the phone who took all the details & with it confirmed that we didn’t need an ambulace (she was still happily watching Cinderella so that counts as non-emergency for Mummy) & if I was happy she’d get a medic to call back to go in more detail within the hour. If she got worse in the meantime call 999. So phone down & walk to put the kettle on. Oh my god. Literally 2 minutes later a paramedic has called me back!! No tea! We went through her long medical history & with me very politely saying we needed a GP rather than minor units she asked if I’d like to go straight to A&E. no no I said. If we can get a Doctor’s appointment in the next few hours that’ll be fine, as we just need someone to check her chest for a crackle. Ok she says and books me in. Doctor will be at Moreton cottage hospital for 10 & will see you then. It was 0920. Golly, good job the ‘incase’ bag was already packed! 10am, GP was running late, (v serious alarm going off on Minors unit). 10 minutes later he’s with us apologising for the delay (personally I’m never quite sure why people apologise for doing their job – but then I guess we are British). After lots of talking & examining he decided that her oxygen saturation levels were just not quite good enough to be sure. So he called the on call Pediatrician at the JR hospital. Quick chat between them & it’s decided the JR want to see her. We’re happy to make our own way there, so the GP prints off some notes for us & tells us to call him if we have any problems at all. Forty minutes later we arrive at the JR. Main Reception booked us in straight away, no queue, no sitting around. Round to children’s A&E, arrive at the reception, greeted with ‘ah we’ve been expecting you’. Taken straight into a side room. At this point monkey is getting ‘pretty upset’ as she’s feeling tired, pants & breathing is a little bit harder work than normal. ‘Is there anything she loves that will help settle her? I’m asked’. Don’t suppose you have any Disney? Brave or anything similar? 30 seconds later a TV is wheeled in front of her & with Brave on the TV she feels Brave & distracted enough to sit on the bed rather than clinging crying to mummy. Meanwhile her nurse starts taking observations & I’m asked if I’ve had a cup of tea yet today? Well.. now that you mention it.. 2 minutes later – tea! In a mug! So now I get to wait around & relax with my tea I’m thinking… nope. In comes the doctor, to give Gwennie a full once over. So in the space of 20 minutes of having walked into A&E we have a treatment plan, she’s on her first nebuliser, we know we’re being admitted, she’s relaxing because not only is getting to watch Brave but every nurse, play specialist & doctor that has been to see her has spoken to her & let her play with their stethoscope, & her mummy is more relaxed because she has a cup of tea. Fast forward to now & I’ve spent the night on a put up bed next to her. Excellent. She’s hysterical when she has a nebuliser so much easier for Mummy to be the bad guy & hold her for it so she’s at least calmer, the Nurse then gets to be the good guy who she’s not scared of. If she was sick at home I would have slept even less anyway as I’d be worried she wasn’t breathing! I am shattered – yes, but so is every other mummy & daddy on these wards trying to settle their child & get them better.

Since coming to the ward she’s been seen by a consultant, 2 Registrar’s & has had a very sweet male SHO keeping a close eye on her.

So why am I telling you all this? Because it’s Easter. Because it’s a Bank Holiday. And because I’m fed up with people complaining about the NHS. I’m tired of people saying that they don’t work 7 days. Because they do & they work fricking hard. Yes sometimes you can get annoyed by someone not seeming to be interested, & yes there are some not so good nurses & doctors out there, but then you get that in every field of work & these people are working to make people’s lives better!

I think they’re pretty awesome as when things are serious they’re the ones that step up. You need to breathe to live (a fact which is often lost on my beloved daughter) so when a child comes in with a respiratory problem they are all over it. Without a doubt the only reason my daughter breathes is because of the NHS & the people in it, who not only work 7 days, but will also make a mum a cup of tea rather than themselves if they have a minute. Soap box off,

 

I do have 2 tiny suggestions for improvement though…

  1. Please please can we have no spill coffee cups for the Childrens Wards?! (I understand kids try & burn themselves but the parents in here are desperate for that fix!)
  2. Can every Nurse be given a light up Olaf on completion of training please – they’re amazing at distracting kids from procedures!

Dear Friend. I’m sorry it’s been a while.

A while ago a friend told me that she felt that I only spoke to her when I needed something, was busy with my busy social life and other friends and that I didn’t appreciate how difficult her life. At the time I couldn’t see what she meant and I have tried to see what she meant. The problem is, it’s probably made me worse now. My ice queen exterior has always been a bit of a joke – and it is funny. Nothing like a good ice maiden, stiff upper lip drinking her tea. But the truth is, I’m not quite the ice maiden I was. Last year, with Gwen being ill so much, I’d started to keep things to myself more. I didn’t want to be that person that only talked about their child. I can remember consciously reminding myself at the start of conversations to ask in detail how someone was, what they’d been up to – hell, even what they thought about the weather, Bake Off, dare I mention – Brexit. Then when someone asked how I was I’d just say ‘ok. You know.’  I was trying so hard not to lean on other people, not to take advantage, that I just stopped talking. Last year was a s*** year. Let’s face it, not many people had a good one. We’re all living in the hope that 2017 will be the year. Less than 3 months in and personally, I’m now hoping 2018 is the year it all comes good, for us and friends.

Despite my attempt at University Life (clearly Gwendolyn had other ideas), this year so far has seen us at home, not able to go to nursery, university, soft play – swimming’s not even worth it now as she starts shivering after 10 minutes (& nobody likes all that admin for just 10 minutes). Gwendolyn received her cerebral palsy diagnosis, a quick x-ray showed that her lungs have now gone back several steps & now we might have a cardiac problem too. But. This post isn’t about me. It’s about you. Which is why I didn’t answer your text. I wanted to be positive about something. So as I am not blessed with healing hands or a magic wand (where’s Helena B-Carter when you need her) I made a princess dress for Gwennie and in the 15 minutes she laughed that day I took a video so I could share it as something happy and positive for everyone. Don’t get me wrong, I have so much to be thankful for, and I really am. I have amazing friends (even if sometimes we all forget it for a bit), oh my god the healthcare & support Gwen is getting from the NHS right now, is just incredible – and extra bonus – one of her doctors is pretty easy on the eye… Gwendolyn’s alive and today we’re not in hospital, somewhere in the world I have a pretty awesome husband (not that I’ll tell him that too often as his ego’s big enough 😉 ).

 

So why didn’t I text you last week? Well it’s a pretty bad excuse. Gwen has a cold. I feel like one of those parents writing a note to teacher because Jonny got a cold on Wednesday so couldn’t come in (although technically Jonny, being a boy/man, would have had man-flu rather than a cold which is serious stuff.) Why is that my excuse? Well. I have a guilty secret. I keep a ‘go-bag’ under my bed. A go-bag? What on earth?! I hear you cry. Well it basically contains everything I need to get me & Gwen through 48 hours in hospital (I went for 48 hours as a lady should always keep enough spare clean underwear for such an occasion in case you ever got run over). And anyone that has spent any time in A&E or a hospital ward knows that supplies are vital for your sanity. Nine days ago my go-bag went from under the bed to the front seat of my car. It’s still there. That’s how seriously I take a cold in this household – because we all know what happened with the last one! Last week started with me at the dentist with tooth ache (turns out I’ve been grinding my teeth & the dentist told me to relax and avoid stress – clearly a comedienne in her spare time) and other than that, the only person I saw to speak to, was Gwen’s doctor (easy on the eye one so every cloud..). I’ve not slept properly in over a week. This is either I’m worried because the snot filled snoring has stopped from the room next door, or she’s crying because she feels pants and can’t get to snot-filled snoring stage. So to get to the point, last week I could have called you, I could have sent you a message. But I didn’t because I didn’t have anything positive to say. I could say you looked awesome in that Instagram picture. But the truth is, I know sometimes you feel rubbish and you’re not happy, and I wish I could wave a magic wand for you. But as I can’t, please bear in mind, I envy you. I completely & utterly envy you. I think you’re one of the luckiest people out there. I wouldn’t swap with you, mainly, because at heart I’m a soppy mum who’s besotted with her daughter, but I thought you should know. I think, not only are you a pretty cool person, but I think you have a pretty awesome life. What you probably don’t know is why I think your life is awesome. It’s not because you can go out when you want, do what you want, drink what you want, or because of your ability to drink wine & eat chocolate & not gain a pound. It’ s because you’re not afraid. Because to me you don’t have anything to be afraid of.

 

So I just wanted to say I’m sorry. I’m sorry I’m not a better friend. I’m sorry I don’t phone or text every week. I’m sorry it takes a couple of hours to reply sometimes. Just because you don’t hear from me, doesn’t mean I’m not thinking of you, wondering what you’re up to, caring & worrying about you.

Please understand, that sometimes, I’m just waiting that little bit longer so that I can find something positive and upbeat to say. Sometimes I’m busy on my latest effort to entertain my brain or bring a smile to Gwennies face. And sometimes. Sometimes, it’s simply because I’m sat next to her bed, holding her hand – just for a little bit longer. Just incase…

 

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Happy New Year to all – reasons to be cheerful

As 2016 draws to a close, everyone is talking about what a horrific year it has been and how many losses everyone has suffered. It has truly been an awful year for many of our friends and family.  Just within our family we’ve lost 3 family members physically, watched as my mother broke her back and then nearly lost her. Psychologically we’ve watched as we’ve lost other friends and family to depression or upset. Jon spent 5 months away from us deployed. Then the worst for us was, when we nearly lost Gwendolyn in December as we watched her lungs collapse and her back on 100%  O2 and hearing the words ‘we don’t know what to do’ from her Doctors.  I’ve now had to suspend my studies at Oxford as Gwendolyn’s lungs are too fragile for nursery and her immune system wiped out. And that’s just us! Not even touching on wider politics or personalities!

But today, when we were talking about what the end of 2016 might mean, I started to list all the positives because I refuse to believe that 2016 could only be a negative year – written off and sent to the back of the wardrobe.

So as many people celebrate 2016 being done and finished and wanting to forget it, we’ll also be raising a glass to be thankful for 2016 as it’s all the horrible times that have made us who we are, whether people like it or not.

2016 Reasons to be cheerful:

Flower Girl

  1. Gwendolyn lived!
  2. We watched as new friends made in PICU watched their own children recover.
  3. My best friend got married and Gwendles got to be flower girl!
  4. We visited the Falklands to see Daddy and Gwendles got to have her first trip in a helicopter and see wild penguins.
  5. Gwendles & I got to visit Canada to see Laura which was amazing (future lifeguard water baby in the making).
  6. Jon was promoted so we’re able to stay in our new cottage with all 3 of us living together for another 2 years.
  7. Another pair of really good friends got married (and in Westminster Abbey so very cool)
  8. I graduated from the Open University with a BSc Honours.
  9. Jon got his civilian flying licence.
  10. I got into Oxford (big yay!!) and successfully
    completed the first term – making some incredible friends on the way.
  11. Every step of the way this year, with every ‘step backwards’ or difficulty we’ve had,
    we’ve seen what amazing and incredible friends we have.
  12. I learnt to knit. (& Jon crochet but not sure if that’s a positive thing yet…)
  13. Some very good friends got engaged!
  14. We’ve gained a new family member!
  15. Lots of amazing things that will happen to us and friends in 2017 will have started in 2016.
  16. And because it needs to be listed twice… a month ago we thought we were losing our daughter BUT we DIDN’T and she was home for Christmas.

 

I hope everyone manages to find a reason to celebrate this year because this year is what will make next
year even better 😉  And let’s face it, we’re all probably due a lottery win now… (Apart from Andy Murray maybe as he’s had a pretty awesome year).

Happy New Year Everyone xxx