Our New Addition

This afternoon, we returned from hospital complete with new G-tube and a bundle of "goodies" (enteral syringes, gauze and antibiotics mainly) . I would like to say we blazed in on a trail of glory, problems fixed and like two new revitalised people, but in reality we were both absolutely zonked and it showed as the afternoon dragged.

The infamous operation (placement of PEG, bronchoscopy and endoscopy) went pretty smoothly. After a minor hiccup with heating, we went up to theatre and I held a terrified Wriggles as she was given gas to send her to sleep. I thought I was prepared for seeing it, but only doors down from PICU I was completely out of my depth seeing her flop, so still and "asleep". Our kind nurse lead me out, tears streaming down my face with nightmares of PICU flashing through my head at high speed like we were there yesterday. My senses were on high alert and it felt like we had never left. Once Costa Coffee had helped calm me down, I sat by our bed and drew Wriggles some pictures to try and help explain her new wiggly worm (48 hours on and this is still not happening. How DO you explain to a tiny girl why her tummy has been perforated and hurts?) and just under an hour later was called to go up to recovery. My goodness, I couldn't get there quick enough! The poor mite was obviously in a fair amount of pain and very disoriented. As always, I have only high praise for the paediatric who were dealing with us; they let me pick her up straight away and rock her to try and make her feel better. Oceans away from having to argue about the benefits of kangaroo care!

Back on our ward, the first 24 hours were what I can only describe as rough. Wriggles barely left my lap apart from two occasions for me to go to the bathroom, and bedtime took hours to transfer her to the cot without her screaming. We had worked our way through a nice selection box of pain relief by now, both IV and through the tube which was now tolerating water feeds. She was still requiring oxygen and constant monitoring, so was a mass of wires. Over night (finally settled) she had her first milk feed at an excruciatingly low rate, which thankfully stayed down.

Thursday was better; with pain relief prescribed on the dot, she was not too bad. Her tube length had a snip as it was far too long for her  and I was ran through the basics of caring for it. Obviously still very sore and very much confined to the bed, the object of the day was slowly increasing milk feeds which were all tolerated. She even lunged at a Quaver and perked up when her baby friend from signing came to visit (with her mummy). Today, discharge day, was a little more trying. The PEG site was showing some signs of infection which have become more pronounced as the day has gone on, and the vast majority of what has gone IN had come back up OUT. Not the plan at all. I knew a G-Tube was not going to be a magic instant fix or reflux cure and that the first few days are bound to be full of teething trouble especially with an infection brewing, but it is so disheartening to see so soon and mop up. I am slowly coming to accept that there are no magic fixes or golden words or therapies or medications and that our road is a long one that no one can forecast, but accepting this is not easy at all and going to bed I felt very low, on both our behalves. Not for the first time, I thought how unfair it should be that some children experience so much so young, and also not for the first time, wondered how things might have been different if medical research and innovation had bought me a few more weeks of pregnancy to aid Wriggles' development.

The bronchoscopy has revealed no startling revelations thankfully, but has shown that Wriggles has a small jaw meaning that her bits and bobs are set further back than they should be. She had a larger than average mass of adenoid tissue and her epiglottis and larynx are a litte too near the airway for someone with known breathing problems. We are being booked in for just one more test, a sleep study, to determine if she presents with sleep apnoea as she is a noisy and restless sleeper and can be quite hyperactive in the day, with previous noting of poor growth. If this is positive, she may need more treatment in some form. The endoscopy noted a slight laxity between stomach and gullet, but nothing significant. Relief yet also a strange disappointment that there is nothing obvious that is "fix-able". 

I am nervous about the weekend. I would feel a lot more comfortable knowing that the community nursing team, gastro nurse and dieticians were on call, which of course they are not, but we have open access at the hospital if we need. I know we will get though, like everything, but in what state who knows. I trust things will get better and we will both be more at ease and more confident as the weeks progress, but right now I have incredibly mixed feelings about the new addition to our family and how we got to this point in the first place.

I wish

Written retrospectively during our recent hospital stay at the beginning of August 2012.

Lightning illuminates the cracks between the drawn blinds. A cracking peal of thunder shakes the relative peace of the ward and the sky flashes bright again. Heavy rain dramatically beats the window, flash flooding the road below. I can barely make out a building just across the road through the lashings of weather.

I wish I could show Wriggles.

Her tubes are still connected to the humidified oxygen tank, barely reaching to the other side of the cot bed. She is still connected to a drip with a tube in her foot carrying IV fluids and drugs. Her other foot has the monitor probe attached. In her little nose sit nasal cannulas and an NG tube, where they are trying to pass fluids which keep coming up. Her chest is sticky with the residue from where ECG pads where attached in the ambulance. Bed baths just do not cut it for removing adhesives.

She loves watching through windows, pressing up against the glass.

At home, she pulls to stand clutching the rim of our windowsill, peering out. She bats the windchime hung over the curtain rail. She presses up squwarking with mirth at people on the other side of the glass, and showing her new skill of pointing at things.

I wish I could show you now, Wriggles.

I wish you could see the cars.

I wish you could see the people.

I wish you could see the puddles.

I wish we were anywhere but here, stuck in a room on isolation nursing, stuck in a bed because there is too much equipment to reach anywhere.

I wish you were well, darling girl.

Sunday Lunch

Written retrospectively during our recent hospital stay at the beginning of August 2012.

5th August (day 6 of being in hospital)

15:00, 5 litres of oxygen

I am tired now. Exhausted. Strung out. I can feel my bones heavy with the need to curl up but my eyes will not close and my brain will not cease. After the past week, adrenaline is still coursing through my body making me on hyper alert about everything. It is in this acute state that there are no inbetweens, only huge, looming and dramatic emotions. How did I do this in NICU for two months? How do too many families do this for longer?

Whilst Wriggles finally succumbed to an afternoon nap, I walked to the adjoining wing of the hospital. Primarily to scour the hospital shop for a belated lunch and stretch my legs but also as it holds a pull as being the wing of the NICU where Wriggles "grew up". So many intense moments, thoughts and experiences happened there, so many memories that linger like ghosts in the reception and all-night Costa Coffee franchise. Memories of daytimes buzzing with people and late nights eerie with silence, only the receptionist lonely at her information desk, the sulky coffee baristas staring into space, the odd lost drunk from A&E and smatterings of visitors like me, drifting aimlessly but with a sad purpose. People too late to have been on a happy visit.

This lunchtime, families packed the forecourt, a couple waited with their tiny new baby in a car seat, with a thin tube protruding from it probably fresh from being discharged from NICU upstairs. Finally taking their baby home at last albeit with accessories they probably never contemplated. It takes me back like yesterday. In a flash, I am there. 15th November 2010 with my baby in a car seat and oxygen tank wired up. Adele, neonatal matron and community nurse bending over to say goodbye; after all she knows my baby as well as I. Probably better. I wear a brown dress, green scarf and a cardigan my mother wore as a young woman. I have worn these this past weekend whilst rooming-in, the first nights I have ever spent with my baby. She snuffled noisily all night. I drew her acrylic cot so close to the fold-down bed they touched. I wanted, no, needed, her as close as physically possible. I ached for her to be in my bed with me, close to my skin, but lacked the confidence with her fragility and wires to whip her out close to me. I loved night feeds. Another precious moment with my baby girl. 4 hourly feeds round the clock. Tick tock, tick tock. The nurses would buzz in and out. "Getting on alright?" Better than alright, I'm finally where I belong: with my child.

Today though, is t-shirt weather. I don't feel just two years old; I feel at least 20. No one expects NICU to be an easy ride and indeed compared to many, ours was a relative breeze. But no one predicted the tumultuous years after leaving, the short bursts of horror at dreadful new admissions, the ceaseless worry about what was next: there was always a next.

At the end of the coffee queue, a father has a curly haired toddler on his hip, the child sleepily sprawled on his shoulder nestling in. A lump comes into my throat and tears prick my eyes. I long for my curly haired toddler, who is in the next wing sound asleep and still covered in wires. I had her on my shoulder but ten minutes ago curling into me, but that isn't what the pangs are suddenly for. It is for a life I imagined, seemingly snatched away. For a life free of medical intervention, a childhood of innocence. Of course, this child may have also had a rough ride, I know nothing of their lives or history, but in this split second their cherubic appearance embodies everything my little girl has missed. She bypassed naivety and has already experienced too much, too young. Maybe after this, the admissions will lessen or better still cease. But these years will never be repeated. They are lost to tears, nightmares and terror. Of course we have had blissful, happy moments and memories but they are not the ones that stay so bright. There is no point dwelling or mourning what could have been: we are lucky. I just wish we were luckier.

Back in our cubicle, Wriggles sleeps with her toy hedgehog by her side. Her fair hair fans out on the crisp white pillow, her NG tube sinking into the cotton creases. Sats: 95% on 5 litres of oxygen. Heartrate: 106. She is peaceful for now. My pyjamas hang off the buggy we innocently arrived at the doctor's in. In the little en-suite bathroom, newly washed socks swirled around in the sink with shampoo drip off the hand rails. On my pull-down bed sits a pile of confiscated Mega-Bloks from the playroom. Outside the window is the distant hum of traffic from the A167. People walking by with umbrellas. 

Just another Sunday afternoon.

The Op

Today, Tuesday 28th August, we are going into hospital again. The PEG insertion: take 3. Third time, lucky right? It may well be put back again, but if all goes to plan then on Wednesday morning the surgery will take place and after that we will be kept in a minimum of 48 hours to check that the tube is working, Wriggles is as comfortable as can be and that the stoma site is healing well.

Thank you all so much for your ongoing support, incredibly kind comments and keeping us in your thoughts. Compared to so many, our experience is but a drop in the ocean though to us it feels huge. Knowing people, many of whom we will never meet to thank, are rooting for my beautiful girl really is such an amazing thing. I leave you with some pictures from our messy afternoon and hope to be back by the weekend on the next part of our little journey!

Much love, x

34/52 Post-finger painting

Stop Start

After a week of feeling on tenterhooks, this week draws to a close feeling a little....well I can't put my finger on it. Even without the scheduled PEG insertion, we had a full diary including a repeat video fluoroscopy and development review.

Monday afternoon, we trundled up to our favourite place (hospital) to have a review with the respiratory SHO to confirm whether or not the scheduled operation to insert a feeding tube and perform a respiratory and endoscopic review, would go ahead as planned. We had had no infections, no hiccups, and Wriggles was so full of beans since getting home she would not sit still for a minute. The consultant was delighted and flabbergasted at her immediate recovery as she tried to empty the nurses' trolley, and went off to tell the anaesthetist the good news. The anaesthetist had news of his own. And a mind of his own. He apologised but was not happy to go ahead as planned. Her chest may be (relatively) as clear as a bell and her energy levels enough for an Olympic team of athletes, but it had only been a week of no oxygen requirements and technically she could still be carrying the final dregs of infections. Sorry, but this week a PEG had to wait or he felt we would be having a reunion even if brief, with the staff on PICU on unpleasant terms. I don't regret his decision; I trust his skill and knowledge. It just felt a little deflating after mentally gearing up, packing a little hospital bag, trying to explain to Wriggles about nose-wiggly-worms and tummy-taps. 

It is now rescheduled for next week on the understanding that the whole thing may be cancelled again.

Tuesday morning, we had our first alarm-clock call since hospital for a repeat fluoroscopy. Wriggles had one last October which appeared clear, that dismantled plans laid 9 months previous for NG feeding prior to a PEG placement, that have now of course come up again and stayed. Barium, a radioactive substance, is added to fluids and food to show the swallow process in a moving X-Ray captured on film to be able to slow down and enlarge to get an accurate and in-depth picture. I packed a little tub of Quavers, a fromage frais and a bottle of milk. Wriggles had been nil by mouth for three weeks-surely this would be an exciting moment for her, albeit confusing? No. It was like the early days of her oral aversion again. She shrank away, clamped her mouth and cried in fear, confusion and revulsion. She held her arms out and shook her head. No amount of cajoling did anything. The girl was not drinking or eating. Apart from one Quaver with barely any barium on. Results: inconclusive. Apart from that everyone is now quite clear that feeding has been very complicated.

Today, was our development review that had been arranged for months. It was the appointment I was most relaxed about. As we have community and out-patient support that is ongoing and a fantastic and open team, I thought I was fairly clued up, at peace and relaxed. Important lesson: you don't know really how you feel about something until you hear it from a consultant. Much of the review was positive and complimentary. Funny how they are never the bits you take away. The bits that stay with me and linger in my mind and that will not go away are: 

Wriggles' developmental age is put at 14 months (she is 2 in three weeks, 21 months corrected).

That possible Cerebal Palsy diagnosis is becoming far more real and much more likely. It is not prevalent enough to diagnose here and now, but she is showing enough things to lead them to suspect it is present in a mild form, affecting three limbs.

Of course, both things are very black and white and there is so much in between. The development age does not take into account the various different areas and groups of skills, some of which she displays at a higher level. It doesn't take into account HER and her funny ways, her brilliant smile, her love of colouring, her new game of cuddling everything and her mad laugh which sounds like a manic sheep. It doesn't acknowledge in a breath her history, her bravery, her brilliance, her resilience...it is just a number. But it is a number that hurts, which is silly because it changes nothing and it is a snapshot of where she is now. She is not so affected that it is forever or for the next year, and even if it was, it means so little compared to the way she lights everything up.

And the CP thing. It's something that has been floating around as a possibility in varying degrees for ages; over a year. Just until recently, it could have been something that might have been a phase, something that might resolve. The muscle tone and core reflexes, which are the giveaways in our case, are showing less sign of going now. We have been working our way through things to help, some which are, but it is becoming apparent that they lessen symptoms for time periods, not resolve the central issue like was hoped initially. Partly, the issue has been partly masked by her amazing progress which has so delighted both me, family and the medical team she knows. She has achieved so much that it really is by the way. Our consultant has put us on the waiting list for an MRI and the plan for now is to press on with physio work. Both legs and her left arm have spasticity; her left leg more pronounced than her arm and right leg which are mild and unless you were a doctor with a keen eye and a tappy-stick, you would be none the wiser.

And so the waiting game goes on. Stop start stop start. Questions followed by answers, but not always the right ones. Followed by more questions. Some said out loud, many debated internally. Who knew it was possible to feel so proud yet so sad and confused.

....service will resume shortly....

This week the internet has been replaced by Grandma visiting, a million (I mean 3) hospital follow-ups, surgery being cancelled, the park, the Baltic art gallery, the seaside by the Quayside, storytelling at the Great North Museum and lots of water play before our 2-3 week ban from baths, swimming and Getting Wet post-operatively.

33/52

Proud

Today, Wriggles was seen by our physio to be fitted for her new pink Piedro boots. After being very wary at first and hiding in me crying (I think the poor sausage associates people touching her feet with blood tests; they are rather pricked with tiny scars) she soon warmed up to them and was proudly kicking her feet about. As well as trying to exercises to help her cruising, our lovely physio and myself reflected on the past year that she has been working with us. She looked undoubtedly proud and told us that Wriggles was one of the children she had worked with who had made one of the biggest leaps in development; music to my ears when I know we still have further to go!

When Jemma started working with us after our previous physio went on maternity leave, Wriggles was approaching a year old and couldn't yet sit unsupported or roll over. Her lower limbs intermittently stiffened and then went very floppy, and we knew cerebral palsy (albeit, fairly mild) amongst other neurological diagnoses, was looming in their minds. It's not that this isn't the case anymore; it's just that Wriggles has surpassed the expectations of just how well she has done and now it is beside the point if in the past she has suffered a specific 'injury'. In under a year, she has learnt to sit, crawl, bear weight supported, roll over in both directions and cruise. Although I was told that there was no reason she wouldn't learn any of these things in time, we were also told that there were no promises, no guarantees and we would have to play the waiting game. Yes, it was likely she would eventually walk but by which means or in what time scale, no one knew. She still isn't walking, but she is able to pull to stand and is confident in cruising now and the physiotherapy and orthotics team are satisfied it may take as little as Piedro boots and time to get her to the next level. Everyone who has worked with her, and continues to, takes pride in how far she has come and what a comical little character she now is as opposed to a helpless jerky baby that came home with me, 21 months ago.

a year ago - "I'm really trying, honest!"

So many people think that a premature baby "just" needs to grow to term when they should have been born, leave the hospital and put on some weight and that is that. Job done, prematurity over, scars left behind. And yes, for a few babies that is the case. They can be carried out of NICU and bar a few development checks, never set foot in hospital again. And then there are those who have a very complicated journey to those who have a slightly complicated journey. Those who stay in hospital for months to come moving from NICU to paediatric care before discharge, those who go home with additional support and community care, those who the future looks rosy until something crops up, those that leave but keep coming back...so many variations. For many, prematurity doesn't end when you leave neonatal, the location just changes. The parents live with memories, labels, words, medical jargon they never understood before but do know, living with uncertainty as they wonder if something that cropped up before will rear it's head again in the future. Even as our little babies develop, we wonder like all mums, is she doing that right, is it on time, is that normal? teamed with the added knowledge of prematurity and statistical after effects.

Of course, our journey is far from over; from being resolved. But it is such a boost to hear that my little star has defied what doctors thought she might achieve. I remember the day after her birth, when one of the neonatal doctors came to speak to me. No promises, he said. The next 48 hours are critical for her immediate survival, let alone future. There is no telling what she may be able to do, or not do. And then as she grew older and the admissions started coming thick and fast, her notes tripling in size and the gulf of development inching wider. But then, slowly, she grabbed. She sat (and fell down). Then sat again. She rolled over by accident. Then rolled over on purpose. She started crouching on all fours. She started making 'bunny-hop' movements. Then she toppled over and crawled. Then one day out the blue, she heaved herself up. And I know, one day, whether in weeks or months, she will take wobbly steps. 

Oh baby girl, how far you have come!

Sink

 When having a slightly troublesome afternoon...

Fill the sink with warm water and add colouring of your choice and bubbles...

...let small child loose with cup and rubber duck....

...join in shouting "SPLASH!" at appropriate moments. Be as loud as your neighbours permit you.

Let the sun do the mopping up.

Stuff (and nonsense?)

WHY is there so much STUFF and WHY won't it stay where I put it? How come I end up with clothes everywhere, socks stuffed into every crevice and a never ending trail of washing and dirty mugs?

Oh wait I know.....

...one certain wriggly toddler type, tearing through the house like a tornado and constantly demanding attention.

"Babies LOVE watching their mummies doing things around the house," my mum said confidently. Well, no one seems to have told my baby and a straw poll of friends with babies of similar ages suggests likewise, or at least if the above statement is true, my mum has got selective mum-amnesia whereby she means that either very little babies not into arguing like watching things like the washing machine or much older toddlers who want to help. Wriggles falls nicely in the middle, in the stage that cannot be left alone for a millisecond otherwise the soap dish ends up down the toilet or she is taking things out the bin, one by one. She doesn't always want me to play with her, but she wants me to be in the background hovering just in case or to show me her new achievements ("since when could you climb up onto the sofa...?!").

"It's a case of showing them who is boss."

Right. Yes, I can see that. Sort of. Except that while you are showing them who is boss, the washing still isn't getting done and you have gone from playing with the messy child to actively provoking arguments with them in the intention that it may buy you some housework time. Or am I going wrong somewhere...? 

I suspect that this is a phase like all the other tiring phases that will pass to be replaced with a new irritating/exhausting/delightful phase like every other time. The sort of phase where it would be really good if there was two of you (or at least two pairs of hands) and you could dredge up some energy from somewhere to either a) do the washing and b) care about doing the washing (washing is interchangeable with picking thing off the floor/hoovering/folding fold-able things/brushing your hair/making dinner that is not just cheese on toast/finding a matching pair of socks/returning phone calls/leaving the house). However much I tidy and try to organise, within days it is back to looking like someone has gleefully chucked things to all four corners or brimming with piles of things removed from floor level to high up....oh wait, that is what happened. 

Now just to find the strength to go back to square one and start all over.

The Letter

Plop.

A thick white envelope plopped through my letterbox this lunchtime. I rightly suspected it was from the hospital and would have the contents of Wriggles' upcoming operation in it. 

Dear Parents or Guardians,

Please bring Wriggles to be admitted to Ward 1a, new Victoria Wing as an in-patient on:

DAY: Tuesday

DATE: 21st August 2012

TIME: 12:00PM

**WRIGGLES WILL BE ADMITTED FOR AN ANAESTHETIC/RESPIRATORY REVIEW AND WILL HAVE PEG INSERTION AND BRONCHOSCOPY ON THE MORNING OF WEDNESDAY 22.8.12. SHE WILL NEED TO STAY IN HOSPITAL FOR A FEW DAYS FOLLOWING THE PROCEDURE**

Please make sure your child has had a bath the evening before and that finger and toe nails are short and clean. Please arrange transport home BEFORE admission. It is not suitable to take public transport. 

Yours sincerely,

Paediatric Gastroenterology

Accompanying was a thick booklet describing about anaesthetics. Most of it I knew anyway from having gone through the finer points with consultants and nurses. It sent a chill through me though.

THIS IS REAL.

This is happening.

Although I am a little daunted by the PEG and tube-feeding for the forseeable future, I am mostly at peace (or at least too exhausted to argue) about that. I have suspected we would end up with one type of tube or another due to the ongoing oral aversion and reflux, so although it was a surprise to receive one on respiratory and neurological grounds, the end is the same. So that bit is as ok as it is ever going to be with a parent. I know a tube will help massively with chest problems and also hopefully decrease vomiting and gagging and importantly give us a ton more freedom to approach feeding from a truly more relaxed angle. I am fine about the bronchoscopy and endoscopy bit, as I have felt for a while that it is high time someone paid more than 5 minutes attention to the state of her airways, lungs and oesophagus.

The bit I am a bit less fine about in the anaesthetic.

Obviously, it HAS to be done. Obviously I want Wriggles 110% comfortable and blissfully ignorant to what is being done and investigated. But it terrifies the living daylights out of me.

I am confident in the skill of all those involved and I know that general anaesthetics are very low-risk and that thousands of people a year receive them, from neonatal to the elderly, and that it is incredibly rare complications happen. I know that people every year in acute states of illness are operated on successfully and laugh in the face of anaesthetics. I am also just hyper aware that we have already been warned that the risk has increased from this recent admission, putting us in an area where in an ideal world, the surgeons would rather wait quite a while. I know provisionally a space is being reserved for us in PICU in case either something happens under anaesthetic (mostly likely a respiratory arrest) or Wriggles becomes rather too friendly with the ventilator once the anaesthetic wears off. I am so scared that we might end up in PICU again and that once more, my baby girl might be tested to her limits. I have spent nearly three weeks with her in a sedated state, and I have no wish to do so again. More to the point, I have no wish for her to be in that state as long as she lives.

Next week, is not going to be a walk in the park.

First Day

And so it starts. 

My new routine:

Lansoprozole MUPS 7.5mg dissolved in water, once a day

Domperidone 2.3ml three times a day

Co-Amoxiclav antibiotics 5ml twice a day until PEG operation (possibly to be replaced with a long term antibiotic post-operation)

Fluoxetine inhaler, one puff twice a day

4 x 100ml bolus feeds of Paediasure (1 calorie per ml) with a 10ml flush of sterile or cooled boiled water (10am, 1pm, 4pm, 7pm) each taking half an hour. Before each feed, the tube needs aspirating and the pH checking.

10 hour continous feed at night of Paediasure Plus (1.5ml calorie per ml) of 400ml at 40ml per hour. Flush in the morning (around 6am).

In one sense it is not too different from our old routine:

Baby gets up.

Baby gets me up.

Baby has bottle. Baby gets bored of bottle. Baby slowly has bottle over morning including lansoprozole sneaked in feed.

Baby has lunch.....etc

Baby goes to bed (fingers crossed).

Except it feels very different. For a start, there is a little machine which beeps at me. There is an awful lot of handwashing. Although the level of washing and sterilising is not too different, it feels different. Things are more regimented. There is a slightly draining feeling that I am a doing little too much jumping around fiddling with medical equipment rather than "mummying".

I know it is the first day.

I know it is bound to be tiring after a fortnight of emotional stress.

I know all this.

I know it is worth it.

I know it could be far far more complicated or stressful.

But I miss the simplicity of the old times. 

I am so grateful for the input of talented consultants who give a fig about making my daughter better not just not their profession or for her well being but mine also. I am so glad that at last someone has put their foot down and said that is enough frequenting of a&e. This is getting too silly and draining the quality of life for you both and should kickstart development sluggishness or address things better in terms of firming things up for the future.

It's just, without wanting to sound too much of a moany-guts, that I am sad it has to be this way. I am sad for my baby that she has lost so much babyish innocence and experienced so much so soon. I am sad for me that my first precious child differs so much from the promised ideal.

BY WRIGGLES

 Hello,

I am back home with my mama and toy hedeghogs after our holiday in hospital. It was really scary but then was really good as everyone made a fuss of me and kept letting me thieve their keyrings and phones. I still have a wiggly worm up my nose which I really don't like at all and is scary when people have to put it back in. I don't like it so I hide in my mum.

Thank you Skittle for your excellent taste in books and Smidge for your superb teapot-I cannot wait to play tea parties! And to everyone for praying for me and thinking of me and wishing me well when I was really poorly and on another planet entirely. Thank you so much (my mama made me write that last bit)

Much love,

Wriggles xxxxxxxxxxxxxxxxxxxxxx

Home Sweet Home

Dear little blog, 

Sorry for neglecting you. It's that daughter of mine you see. She got sick again. Like all the other times; very very quickly.

Sunday evening she was a bit of a grump with a runny nose. Sunday middle-of-the-night she had a hacking cough that barely gave her time to catch her breath in between. Monday first-thing she was all over the place. Optimistically I secured the first doctors appointment of the day. My GP reached for her telephone and rang an emergency ambulance.

They were so kind, so calm, the two paramedics. Ladies, both with cropped hair probably mid-forties. Not that it matters. They popped Wriggles on my knee, attached four sticky ECG leads pads to her chest and started up oxygen through a mask. 

"I think we just need some speed," one said gently. "Hold on!"

It was so bizarre, speeding through the familiar little streets we walk every day. NEE NAW NEE NAWWW NEE NAWWWWW past the church where we go to music groups NEEE NAWWWE NEE NAWWW past the coffee shops we meet friends at NEEE NAWWW NEE NAWWW past the park NEEE NAWWWWE NEEE NAWWWW why aren't her sats (oxygen saturation levels, measured in %) picking up? NEEEE NAWWWW NEEEE NAWWWWW! 

And then suddenly we were in a&e being quickly guided to bloody 'resus', the resuscitation bays again. The emergenciest bit of accident and emergency. The bit with very scary machines and bits of equipment. The ones that have everything for every occasion because they cannot predict what the patients will do. Back in the same bed as last autumn, the one by the door in the corner. An army of doctors and nurses were waiting for us and immediately swarmed around us, sticking things here, putting things there, fiddling with machines and buttons, barking questions and taking histories at breakneck speed. A chest x-ray was ordered and some poor nurse tried to administer steroids to Wriggles, who by this point was clearly terrified and hysterical. She clung to me like a limpet and would not settle unless I was physically next to her on the bed. So there I stayed. My daughter, the social butterfly, was quite definitely sick if she wanted me. Normally, I am tossed aside for whoever else is in her sight line or has something shinier so this was very unusual.

It seemed hours, but I think it was only an hour or two until we were declared stable enough to travel down the corridor to the paediatric section. There we stayed, in the room adjoining the nurses desk to be closely monitored. Wriggles was still on a lot of oxygen with at least hourly nebulisers and as many drugs as they could persuade her to take spit out. As the day wore on, we were secured a bed on the respiratory ward, wheeled over to the day unit and settled down into a state on not-so emergency. I dared to breathe a sigh of relief, that maybe the drama had passed and we would be in and out in a few days after a blast of oxygen and a course of antibiotics. Maybe, I thought hopefully, we would still make our flight on Friday to join my family in Devon. 

Oh! Someone must have been laughing at me.

Upon getting to Ward 2, the respiratory ward, Wriggles began to crash. She began struggling far worse than when we had arrived, and her machine barely quietened between alarming. Her heart rate was flirting with 200 bpm and her sats were dipping below 80. The oxygen went up. 10 litres and counting. The monitor still alarmed. More doctors swarmed in. Cannulas were placed, blood gases rushed Upstairs. The place that needed no name, no introduction. Upstairs. Ward 12, Paediatric Intensive Care, level 4. Upstairs, my nemesis of nightmares. 
Time ticked on. 11pm. Midnight. Nothing was getting better. A consultant from Upstairs was called to assess her. She agreed to enquire about beds. 
In a daze of horror, I began to pack, so convinced that we were going. By 12:30 I was ready to move again, completely switched off and living on fear. I would not leave the cot, rigidly stuck holding my sick child's hand.
And then my guardian angel, in the form of the respiratory SHO, came and worked some magic. Finally, Wriggles' sats stabilised in the 90s and a sigh of relief was breathed all round. We were on a very fine line, but for now, the acute drama has passed.

The next 24-48 hours was similar: Tuesday night we escaped a similar near-transfer to PICU after being formally accepted there, but thankfully never actually getting around to leaving our ward. In the early hours of Wednesday, I was warned we were on very shaky ground and all it would take was one small wobble and Wriggles would be on a ventilator again. I firmly believe that if we had had a less experienced consultant, we would have ended up on one. Our saving grace was the depth of knowledge and willingness to take risks of our consultant who guided us out the shakiest moments and of the PICU consultant we borrowed who knew Wriggles' history inside out. Wednesday, we had another scare when a coughing fit sent her de-saturated to 64 and in 18 litres of oxygen which took a long time to wean down and Upstairs alerted for the third time. Come Thursday, things began to subside, and slowly more lucid periods began to creep in and litre by litre the oxygen began to come down. 

From then on, it was a long slog, with it taking a further 8 days to manage any time oxygen free. It took days to get her off IVT fluids with a decision being made that we would go home tube-feeding as the consultants suspected intermittent aspiration into her lungs-something that has been considered in varying degrees for over a year. And so here we are, back home at last, with a pump and a NG feeding kit and a date set for a more permanent PEG (gastric) tube being placed. I feel so drained and exhausted, and I suspect it will take a while to process some of the more traumatic moments from the 15 day stay. Wriggles, although outwardly herself once more, has kittens if you dare go near her face or feet, where so many blood tests were performed. She is wary of people, and can spot medical equipment a mile off. If she catches sight of a syringe or spare-NG tube, she screams and hides. As so many have said, it is no surprise she has become so orally aversive. My poor baby: so much, soon soon. So much of her innocence dirtied and her small life tested and tried when it should be pure enjoyment and joy. 

So. A new chapter begins, of tube feeding and investigations by different teams. I have half expected tube feeding for a while, but for dietary and nutritional reasons. Despite the end being the same, it feels a struggle to get used to it although I know it will have many more longer-term benefits. Although it ended up being placed for respiratory safe-guarding, it will help so much as we eventually return to feeding once more.

Little blog, I am tired.

Mouse x