Bronchi Bébés and the bladdy amazing NHS

The last few weeks have been a far cry from our usual pre-Christmas shenanigans. Both Boddler and Bebette were taken ill, and not just poorly with a Christmas cold, they both had collapsed lungs, also known as chest infections, also knows as pneumonia, bronchitis, also known as hospitalisation and – in Bebette’s case – intensive care. It was horrific.

This post is about that experience and – given the nature of the events – probably won’t be as light-hearted as usual. It wasn’t really a funny situation. Actually it was certainement the most terrible thing I have ever experienced. As I write this I will cry as I try to process what happened, which I’ve been politely blocking.

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Northwards we go

The story begins when we optimistically / naively thought we could take our babes on a “quick trip” up North to visit family and friends and do a bit of Yuletide celebrating. I had been fretting about the long car journey (usually 4-5 hours) with Bebette who, up until then, in all her 7 weeks had not managed a car journey *ever* without screaming her head off. I mean the simple sight of the car seat sent her into meltdown. I spent the day packing and prepping a routine to attempt to get her to the North, without our ear drums giving up their day jobs.  Btw the key element of the plan is a bath, which she hates, but exhausts her sufficiently to fall into a deep sleep.

By some miracle my travel baby plan went… to plan, and Bebette slept the whole journey. As did Boddler. Peace. For 3.5 hours (quickest drive ever – thanks Papa FF). We could not believe it. Little did we know that karma was waiting just round the corner. The next days we had some joyous celebrations and visits, until Boddler went to bed and developed a mad temperature. Actual temperature unknown due to my inability to pack a thermometer. We got ourselves so worried, Papa FF went off to borrow Auntie Em’s thermometer at 3am, which obviously confirmed what our hands were telling us – he had a raging temperature and was looking sick as a dog. We cuddled everyone together until daylight and then the next day – a Sunday – we dashed to purchase another thermometer (there were no Braun in the ear ones left, so we got a head scanner – we do not recommend the scanners – Braun in the ear is the way forward). Of course it was Sunday so the doctors was shut, meaning I spent the day frantically scanning Boddler’s head, assessing his behaviour, and consulting friends and family to try to determine what level of panic I should be reaching.  Boddler was coughing a bit, seemed to be wheezy, and breathing quite rapidly, had a gunky eye, was teary and clingy.  And hot. The best advice I got was to “look at the child not the number” i.e. stop freaking out about the temperature and look at how your child is coping with the illness. There wasn’t much I could do about the situation other than wait to see if anything got markedly worse – however every dose of calpol seemed to have a magic effect and Boddler went from lethargic to pelting around the house.  Just to add to the stress, Papa FF had to voyage over to France to say goodbye to his Bonne-Maman.  We had agreed to stay behind in the interests of a peaceful sendoff, but that meant I was left with the two babes and a worried Papa trying to assist from afar.

Out of hours 

Boddler was gradually getting worse and was clearly pretty poorly. A call to 111 confirmed he was indeed unwell, based on all their questions, and ideally should be checked out in person by a medical professional, asap. However I also had 7 week old Bebette, who was very fussy and frankly couldn’t really be left on her own for more than 5 minutes without having a meltdown. I was with my parents, one of whom needed to be in work the next day and the other who has recently had a double knee replacement.  Quandary –  Do I (a) go to the hospital in the middle of the night on a rainy Sunday, with a sick and tired Boddler, tiny un-immunised Bebette, and a tired Grandad, or (b) not sleep a wink, worry all night, fear for the worst until the morning and hope to visit a local doctor asap? Just as I thought I had made my decision, Boddler started to vomit immediately after being given a dose of calpol, and I could not for the life of me understand from the instructions whether I could safely give him another dose or not. I knew then that we had to make the middle of the night doctor trip, even though an appointment at 11pm on the other side of Sheffield was far from ideal. Off we journeyed with Grandad F as my man of the hour, and Boddler did another big vomit upon exiting the car, just to confirm we were doing the right thing.

The initial diagnosis at 11pm was a chest infection, high temperature and some difficulty breathing aka a trip to the Children’s hospital for at least a few days oxygen and antibiotic support. Urgh. Poor Boddler. And poor us as we were not prepared for this. Despite walking around like a bag woman I had not actually packed any useful survival items, particularly not for myself. If you need a glossy scented lip balm or foot massage oil,  I have 5, but clean undies, deodorant and water, negative. By now it was 1am and we were waiting at the Children’s hospital to be seen again. In amongst the drunk teenagers, and sick little people, the triage nurse kindly asked if I had realised that Boddler had a “very high” temperature (oh really? we were actually just passing and thought we would nip in for shits and giggles!) – after a little bit of drama during which Boddler decided calpol was poison, he eventually took it and kept it down, and so perked up no end.  He discovered a whole host of joyous toys to play with (*hospital toys are possibly not the most prudent option if you want to avoid more germs*) – and by the time he was seen by the young doctor on duty, around 2.30am, he was almost back to his normal self. Diagnosis now amended to viral infection with calpolic treatment and basically go home.  I have to say at that point Grandad (who had rocked Bebette into a peaceful sleep on repeat for the past 3 hours with his guns of steel) and I sighed with relief and headed back to the car and home.

Btw – side note – exiting an empty car park at 3am on a Monday morning, with a screaming Bebette and whimpering Boddler was bizarrely one of the most excruciating experiences I have had of late. I didn’t know what was still to come, but at that moment, both me and Grandad, who wouldn’t say boo to a ghost, were using expletives I wouldn’t begin to repeat here, in our attempts to try to find the exit, which seemingly was somewhere in the sky and at an angle that no one could reasonably be expected to manoeuvre into unless they were driving one of those tiny smart cars for ants.  RIDIKCULOUS. Then the car park ticket didn’t want to go in the machine, nor be read, having been rained on and squished beyond recognition by my derriere, and I genuinely contemplated glugging the bottle of calpol and throwing myself under the stationary car wheels.

Home, Boddler breathing and Duchess

Anyway, *trying to hide rage problems* we then spent all day Monday taking it easy and waiting for Papa’s return. Calpol continued to work / mask the extent of Boddler’s sickness.  A bit of a fresh air the next day and we were off back down South to the quiet safety of our own home. Alas, as we arrived at home, at 11pm, Boddler suddenly started to gasp for breath and vomited again. This time he was really struggling for breath, and we knew we needed urgent help. We calmed him down, helping him to breathe and cleaned him up, whilst we called 111 and they sent an ambulance.  After a slightly fraught discussion about who should do what, and Boddler intervening with cries of “MUMMY” in a full yorkshire accent, I was loaded into the ambulance with a weepy hot Boddler, my purse and phone and not a lot else. We arrived at our local A&E with a terrified little Boddler who had decided that every piece of equipment posed a threat to his life and even the oxygen finger reader was number 1 worst enemy.  He was just in his nappy (massive error on my part, why I thought a blanket was sufficient is beyond me), and we were sitting in the waiting area trying to catch a urine sample (too bizarre for words).  After another dose of calpol, Boddler was back in action at the hospital toy station, and at around 4am had made a new friend called Duchess, who politely informed him that he shouldn’t throw anything inside (“my mum says throwing is for outside only” – so true Duchess, I entirely agree) and was mildly shocked when Boddler started chasing her around the hospital and his nappy fell down. Ploof. It was the highlight of my night.  The doctor was again erring towards sending us home with a virus assessment, but I insisted they wait to review Boddler once the calpol had worn off.  Papa FF arrived with Bebette who needed milk urgently, and we all watched as Boddler deteriorated and suddenly was in the emergency room requiring oxygen and nebulisers. Giving small children nebulisers is like a form of extreme torture and anyone that has had the horror of being present during the process will confirm it is sickening to witness. Of course there is good reason for administering such things but it is deeply unpleasant holding a mask over your child’s face.

Fast forward to us being admitted to a ward and Boddler getting a hearty dose of antibiotics, more oxygen reading and beeping, and dodging his oxygen mask at any opportunity.  Time for another quandary: Boddler was not well and had defaulted to screams of “MUMMY” for all communication needs. There was no way I could leave him.  Papa did his best but Boddler was having none of it, it was Mummy or meltdown.  Bebette, who by this time was doing little barking coughs of her own, really did not need to be in the hospital full of germs for extended periods of time.  And our fellow ward friends did not need to have a new baby screaming in the middle of the night. Very reluctantly I sent off my tiny 7 week old baby with Papa, with instructions on locating the frozen milk stocks.  I pulled up my bed next to Boddler, along with a mega breast pump, a hearty supply of snacks and water and tears running down my cheeks.  You cannot be in two places at once.

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Activity walls of joy in the hospital

The next morning, Boddler was absolutely on the mend, playing and exploring, but my Bebette was looking decidedly worse for wear.  Papa had brought her in against our original plan, knowing she wasn’t quite right, but not wanting to alarm me before he got to us.  After I took her in my arms and noticed how quiet she was, and one of the nurses confirmed “that bebe doesn’t look well” I panicked and rushed her downstairs to A&E, where we spent the day being observed. Another long day in bright white lights, listening to the hustle and bustle and drama of a busy A&E.  Ultimately the conclusion was yes, she is poorly too, yes she has bronchiolitis, yes she has a temperature, but there’s not a lot that can be done so go home and rest. Boddler was simultaneously released, so we breathed a huge sigh of relief and headed home, to shower and bed.  We are done! What a nightmare.

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Bebette ups the ante

Alas, the relief was short-lived. After a trip to the GP with Bebette the day after A&E, and confirmation that her oxygen levels were fine, Bebette and I had a troubled night, with her feeding very little, doing little barky/ choking type coughs, and seeming again out of sorts, spiking temperatures. By Saturday morning she was visibly working hard for her breath and couldn’t feed comfortably.  (I made a video so if anyone is concerned and wants to see what a baby working for breath looks like, especially around the lungs and chest area, just get in touch and I can share it – it was useful to film to compare with the previous day to see that it was getting worse).

We packed our bags (being a bit more organised after the night with Boddler and nappy-gate) and dashed to A&E where Bebette was promptly put on oxygen and then opti-flow oxygen.  She hadn’t had any food for a good 16 hours.  Papa took Boddler back home for nap time and food, thinking all was under control.  Then the seriousness of Bebette’s situation really hit me. In my arms, she got very worked up with someone fiddling with her mask and then, suddenly, the colour drained from her face, she closed her eyes and passed out.  My heart fell through my stomach – I mustered a scream sufficient to get most of the emergency team into the room rapidly. Bebette’s forehead flashed spots of angry red and I looked around to see if anyone could explain what was happening, and to gauge if this was somehow normal… all I saw were terrified faces and at that moment I lost a piece of myself. Someone grabbed Bebette from my arms and started to rub her and pat her back, until her colour started to come back and she opened her eyes. There was a huge, collective sigh of relief and most people disappeared from the room as quickly as they had appeared, except the core team who continued to fuss around her and confirmed she needed to be admitted to the ward asap (we had been waiting for a bed for a long time).

I didn’t know what to do other than texting Papa to tell him to get in the car straight away.  I didn’t write much more because I couldn’t compute what was happening to our little lady or what we could do.

PICU

Fast forward a few hours, and a botched transfer up to the ward (it would have been perfect comical material if it wasn’t my beautiful daughter being jostled around) and Bebette is not improving. There’s a lot of talk about the “worst” part of bronchiolitis being days 3 – 5 of the illness. But of course it’s hard to determine when the illness officially begun.

Bebette is getting more and more frustrated by the masks and wires, she’s hungry, she’s absolutely knackered and almost certainly feeling like absolute rubbish as well. The lights are bright, the noise is loud and disturbing, she’s telling us she has almost had enough, and we are starting to really panic.  We start mobilising friends and relatives to look after Boddler because we need to be with Bebette.  Together, Because it is really serious.

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The paedeatric consultant, the same woman that discharged Alex two days prior, was brilliant and explained to us that there were two potential routes forward; one presupposing this is the worst day of illness, and that Bebette starts to improve, then more oxygen, more monitoring, antibiotics, lumbar punctures to check for bacteria in the brain (she did explain this in more detail to allay the immediate heart attack reaction – but as I’m clearly not a qualified medical professional I am just giving you the layman’s highlights) and hopefully home soon… the other was more terrifying yet, sedation, intubating, travelling to another hospital where they had paedeatric intensive care, … The consultant clarified that by intubating Bebette and allowing her body to rest, and a machine to breathe for her, we were giving her more chance to fight the virus, whatever it was that was causing her lungs to be infected and one of them partially collapsed.

As the time went by, the doctors multiplied, they came and observed the little lady, frowned, muttered, and eventually decided on the second option. Cue more sobbing from this mama, as I saw my tiny baby girl being wheeled up to theatre to be knocked out and intubated. Then the anaesthetist team pitched up and this is where the experience got even more crazy: we were made to feel very safe, very comfortable, to the point that Papa and the team were cracking jokes.  Terrible jokes, but jokes nonetheless. Everything that was happening was clearly explained to us, we were offered a hot drink whilst they were doing their work, we reviewed the X-rays with the consultant, and the next thing we knew we were in an ambulance, it was 2am, Bebette was safely tucked into a little space rocket, and again we were being offered a biscuit and a drink for the journey.  As a tired and hungry breastfeeding mama, I actually needed that biscuit.  It was just so thoughtful.  The chap leading the team and driving made everything seem normal and explained we were going to have the blue lights and sirens on just because “we will just get there a bit faster – don’t worry about it”.  The South Thames Retrieval Service even gave Bebette a little teddy, which she had with her all through the journey and which is now in her bed.  The service and the team were just fantastic.

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Socks were also critical to keep tiny tootsies warm – we were lucky enough to have a newly knitted selection.

So we arrive with our entourage at Denmark Hill PICU and are greeted by another team of legends who tell us to go and sit in the parents room whilst they get Bebette comfortable. Thirty minutes later we are allowed to see her and she is all wrapped up, with her little teddy, and her special fox blanket from Grandma that I managed to grab on the way out of our house, what felt like days ago.  She has wires and tubes and tape all over and I find that I’m sobbing again, feeling crap and useless, my poor tiny little scraggle and I can do nothing to help her. I’m a waste of space. I’ve had a daughter for a grand total of 8 weeks and I haven’t looked after her well enough.  I haven’t told her how much I love her and how much I want to love her.  I don’t know her yet.  Not being able to take my baby in my arms was heartbreaking.  Seeing her tiny body frozen, rhythmically breathing but, to the uninitiated eye, lifeless, …. I can’t even find the words.  We have not had enough time.  My body aches to hold her and feed her and to comfort her.  I can’t look at Papa FF.  I feel broken.

I knew she was as safe as she could be, but she wasn’t with me, and it felt all wrong.  I was simply not prepared for anything like this to happen.

For what was left of that night, Papa and I curled up on tiny sofa chairs and tried to sleep, between tears.  By this time we had mobilised family support and had anxious relatives waiting to hear what was going on, but we couldn’t really provide much by way of update. Those days were the scariest days of my life so far. I just did not know what could happen.  The team in the PICU were unbelievably fantastic, supportive, reassuring, took the time to talk to us and answer Papa’s 4,590 questions (one of them who was partially deaf had a lucky escape and missed half of the French inquisition) and were generally mesmerising to watch in action. There was beeping coming from all angles, tubes everywhere, and a cleanliness regime so strict that I found myself day dreaming about antibacterial soap and wearing a giant glove.  During this time, I desperately wanted Bebette to keep getting my milk and so was frantically pumping at regular intervals. If you’re breastfeeding and in hospital you get meals to keep you going. At first I was non-plussed by this, but by the end of my stay I was positively salivating at the thought of my steamed fish and chips and chocolate custard pudding.  Any stress-related weight loss that occurred in the early phases of the drama were rapidly recovered thanks to the NHS food supplies, and Costa christmas coffees.

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We were sent home to get a proper nights’ sleep, and whilst we attempted some sleep, Bebette took matters into her own hands and extubated herself. What that means is she ejected her breathing tube, without asking the doctors to help her out. Forgive the lack of technical lingo. This would have been extremely stressful for the poor nurse caring for her that night, who had insisted we go home to rest, and who herself was 36 weeks pregnant, but she so kindly waited until morning to give us a courtesy call just to let us know what had happened and to tell us not to worry.  As Bebette was managing fine without the breathing tube, she didn’t need to have it reinserted (good news) but she had skipped the drug weaning process which required her to have small doses of various drugs until she was ok without them, rather than going from a high dose to nada cold turkey (not so good).  She spent a day or so frantically and silently crying (very bizarre, poor lamb had no voice), wide awake, which in hindsight was her withdrawing from the drugs.  I had convinced myself she was just very grumpy after so much drama and so many nappy changes, which btw she continues to absolutely hate. Her poor bottom was red raw from the antibiotics and she was just fed the fred up.

Anyway, the story is nearing its close now with a joyous happy ending, as the strong little fighter massively improved in the following days. Blood tests confirmed she had RSV virus, strains A AND B.  This had developed into a lung infection aka bronchiolitis. She did not have a bacterial infection and therefore no lumbar puncture required.  She was very much on the mend and fighting fit after her 2 days in ICU and night in high dependency.  We were in hospital for a total of 7 days from the second A&E visit, and I barely left her side or the hospital room for that time. I couldn’t do anything except stare into space, chat to the nurses in awe of their life-saving skills, mutter as I hooked myself up to the milking machine, question my value to society, and eventually get excited for the steamy, starchy, soggy surprise that was coming my way at 8am, 12pm and 5pm every day.  I can still hear the beeping machines.

Taking Bebette home and cuddling up with Boddler last Saturday was the most glorious thing that has happened to us.  These last weeks have been about realising how lucky we are to have our children and each other, how brave and strong those children are, how fantastic our health service is in emergency circumstances, how much support we are lucky to have from people around us, and how much we should REALLY appreciate every day we get, as parents, partners, members of a family and members of society.

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Please always be grateful for your little ones, please keep a close eye on them during the bronchi season (details and symptoms can be found here) and please don’t hesitate to seek help and get advice from the experts if you are in any doubt about the health of your bebe.

For anyone reading this that works for the NHS, thank you. There aren’t words that can really do this justice, but you are all amazing and we are so grateful.

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An extra special family snap (photo credit: the awesome Russ Jackson Photography)

2 thoughts on “Bronchi Bébés and the bladdy amazing NHS

  1. Weeping as I read this. So enormously stressful for you all and a reminder to me to tell my 3 every day, grown up as they are, how precious and how very loved they are. Thank you and have a lovely Christmas all together. Xxx

    Like

  2. Pingback: Breastfeeding: the sequel | Be My Bébé

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