Mixed Start to the Week

Yesterday we had a respiratory follow up at the hospital Outpatients clinic. Although we have been busy with home visits for physio and a short speech and language therapy group, it has been a while mercifully since we were last at hospital. Typically, it had to be the sunniest and nicest day it has been in a long while (...2012?) so we set off early, driven by Wriggles shouting "[S]WIIIIIIIIIIIIIII[NGS]" like a mad child and shrieking if I deviated to do anything ridiculous like locate shoes, brush my teeth or get dressed along the way. To her approval we got on the bus and arrived at Leazes Park which is helpfully opposite the hospital and houses two playgrounds and a rather large lake containing ducks, geese and some enormous swans. I've waxed lyrical before about our playground love, but we really can't get enough of them. Due to her lack of independent mobility, few other places or experiences give her an opportunity to let off steam and energy at her pace. Or indulge her scarily daredevil side.

 

 The appointment was a bit of a let down. I was hoping we'd see either our named consultant who took us under his wing last summer and made the order to place the feeding tube, or either the other senior consultant or SHO who both know Wriggles very well and whose judgement I trust, which is more than I can say for some of the paeds we have come across. Instead we got a new registrar, who was very nice but also very new and said "Ummmmmmmmmmmm..." a lot. In the end, she waited until one of the senior consultants was free to run things past him, which although was reassuring and improvement from some previous appointments, I'd have preferred to wait and have the actual appointment with him to talk things through myself. 

The upshot was that until we have the consultation with ENT about removal of tonsils and adenoids, respiratory can't really move on with much as things are currently stable but could be improved. Since the tube was placed, the admissions and chest infections have decreased massively. We have had one queried aspiration admission, one viral admission and otherwise have broken the cycle of hell and managed bugs at home...albeit only just sometimes. Now that side of things seems better controlled, it has become increasingly obvious that reflux flare-ups are very much interconnected to chest health. It is quite common to become quite reliant on salbutomal inhalers during a bad reflux patch and Wriggles quite often acquires a blue tinge around the mouth when refluxing. So her reflux meds have been upped and the ENT department are being chased. Wriggles mouth-breathes a lot and constantly snuffles, which could be a symptom of her over-large tonsils and adenoids at least partially blocking her airways. This could potentially be putting extra pressure on her diaphragm, aggravating the reflux. So hopefully, taking them out will make an improvement. Please. If not, a fundoplication was mentioned again-although we have some bridges to cross before that luckily. 

Annoyingly, yet another video fluoroscopy referral has got lost in the system, and until that which will assess how "safe" her swallow is now, we still are a no-fluids-orally zone. By the time we get the VF done, it will have been over a year since Wriggles drank anything and I very much hope our feeding/speech and language therapist comes out the woodwork to help with that as I suspect it will not be easy. She never could drink from anything but a particular teat on a bottle and never thin liquids as she choked, so I do really hope we won't be left alone to learn it all from scratch, especially as a will-be-3 year old is a different kettle of fish to an under 1. After clinic running over an hour late, we then had a nice long wait to pick up new dosage meds from the hospital pharmacy. What a treat.

Frustrated by waiting around, being made to sit in her buggy ("WALK!"...which I wouldn't mind, but she tires after a very minute distance thanks to the cerebral palsy and more common Toddler Syndrome, thus making 100 metres a game of musical buggies) for part of the ride home and life in general, Wriggles resumed her tirade of shouting incomprehensible gibberish non-stop, so once home in desperation I let her torture wash Long-Legged-Mouse who has become the victim for most mischief since Noodle the beloved hedgehog got felt tipped and had to spend the night in the airing cupboard which vexed both Wriggles and no doubt him. In the last week, Long-Legged-Mouse has been attacked with Grandma's blusher, repeatedly drowned and nearly been fed to some giant fish.

I don't know what or whom was wetter; Wriggles, Long-Legged-Mouse, me or the kitchen floor, due to a faulty plug in our water table. All were thoroughly soaked, but it used up a fractious hour and finally removed the traces of makeup from poor Long-Legged-Mouse. I hung her out to dry by her tail (it's a tough life) and filled up a large plastic box with water and bubble bath, stripped off the sopping toddler and let her have an impromptu al fresco "bath" just outside the kitchen door on what I fondly call our balcony. Sceptics might call it the top step of the industrial stairs down to our concrete yard. 

To round it off, we kindly treated both our street and the back street of the next one down to my tuneless 'Five Little Ducks' accompanied by my backing-shrieker before Wriggles paraded her bare bottom for all to see. I wish the NHS would provide at least a complementary bubble bath or such for Mouse Washing or such activities needed post-appointments. I can quite empathise with Wriggles that she does get very anxious during them, particularly when they insist on weighing her and checking oxygen levels and thus is a nightmare as she can't quite calm herself properly after them, but it doesn't make looking after her any easier when she just shouts gibber until bedtime as a result. Maybe next time I'll put it in the comments box.

Mental note: request next hospital appointment to fall on a truly rubbish WET day.

Splish, Splash Bouce

We've all had our grievances and gripes about the NHS. It can get things wrong, from a hopeless lack of GP appointments to a waiting list longer than your arm, my arm and so-and-so-over-there's arm put together for any appointment not deemed urgent. And as Beadzoid wrote this week, it can get things badly wrong. But today, I just wanted to have a little rave because it also can get things right. And when it works, it works really well and makes a difference to the life of normal people. 

This morning, we went to a group arranged by NHS community paediatrics in our area called 'Splish, Splash, Bounce'. I am lucky to live near a big teaching hospital with a huge and greatly respected paediatric department that coordinates community outreach exceptionally well. Today we started an 8-week course of hydrotherapy and rebound treatment (physio on a trampoline). It also has some other umbrella services that run alongside this group and if nothing else, is a brilliant resource of meeting parents in a similar situation. The group is especially for babies and pre-schoolers with additional needs, particularly those with physical disabilities from the milder end of the scale like us to the much more severe end. 

We went last year, and whilst I enjoyed it and Wriggles loved being in the water, I always felt out of place. We hadn't come that near a diagnosis yet and as she was only a year old I had a horrible feeling that maybe I was imaging things and making a drama out of everything, using her prematurity as a shield. Last year other group members all seemed to have "proper" diagnoses and recognised conditions under the belt. They were all more of a toddler age and their parents seemed so more savvy-in hindsight because they had been dealing with this longer. This year, we are in that position and in the year that has elapsed we did get our diagnosis which in part has made things a little easier in that I don't just feel like a mad moaning woman with "a feeling in my bones" that something is amiss. We have found that secret world of multiple therapies, medical assistance and untangled some of the whats, whys and hows. In many ways, I am still very new and naive to this all. I am still at time struggling to accept, to find where we fit in. But this year, I felt much more comfortable and also more aware of things and in turn, more grateful services like this were on offer to us. Last year, a niggling part of paranoid-me thought they think I'm making it up, they're calling my bluff inviting us to special needs groups to see if I crack and suddenly decide nothing is wrong. Now I have researched more thoroughly, read up more, tried to access more things with varying degrees of success and accepted that my child needs some extra help, and I know all too well that services are greatly strained and really, you don't get offers of things that will not be beneficial! The group is number-controlled so the children don't get overwhelmed and so the physiotherapists can pay due attention to each child. As well as the physios present (in water and on trampoline) there are early years workers whom are like portage workers and people trained in speech & language and occupational therapy. This means that using signing as Wriggles does, does not stand out but is accepted and encouraged and there are people on hand to teach new signs. And some of the group leaders even have an idea what she might be going on about, rather than just waving her arms wildly whilst gabbling! Between the hydrotherapy and the rebound, there is a snack time which for us doubles up as feeding "therapy". All the adults know and understand oral aversion and quietly encourage and support, rather than shoving biscuits in her face and shouting "corrrrr bet you're glad she doesn't eat a million chocolate buttons to rot her teeth like my one!". They offer a mix of snacks to try and explore different sensory reactions rather than trying to be the most organic/healthy/cheapest/trendy buffet as so many of the children have feeding issues. They don't bat an eyelid at giving Wriggles an empty beaker so she can be like the children who can drink. I don't have to explain a thing. It is simply, bliss. Last year I feared I was just a bad parent holding my daughter back. This year, I know I am trying until I am blue in the face but that our road is a bit jumbled up.

I would be happy paying to access a group, so to have it on the NHS is icing on the proverbial cake. It is such a relief to know that there are services to help both child and parents. There are so many stories of children being failed by lack of access to things that when you have a positive experience, like this, it makes you very grateful. We have had our own share of care that ranged from scornful to downright unhelpful and so opportunities like these make up for it a bit. It is also a reminder that the NHS should not just be viewed as a luxury. It is the National Health Service, not an add-on. Without it, millions of people would be left to flounder in both development and health. The NHS is not just about hospital procedures or primary care trusts, it is about making the lives of people more comfortable and facilitating Independence. It is about support as much as treatment. And today, it got things just right.




....and in true NHS fashion, I just recieved a letter through the post for our next respiratory follow up. Despite our consultant wanting to see us in under three months time, we cannot have a slot until June and even then they can't gurantee us seeing our resignated consultant. You win some, you loose some...sigh.

Aftermath

After Monday's letter about the MRI results, I felt hit by a ton a bricks. I don't know why exactly and to be honest a belligerent part of me thinks, look does there HAVE to be a reason? I think it is though because largely I don't have to daily face up to Wriggles having cerebral palsy. I really hesitate calling it a disability or special needs, but have been doing some thinking recently and I guess, like it or lump, that is what it is. At the mild end of the spectrum, but definitely something additional to your average cardboard box menacing child. Of course, we have the daily development delays and tube feedings and pretty frequent contact with medical professionals, but it isn't very often that the words 'cerebral palsy' are mentioned or an in depth discussion is called for. Alluded to certainly, and in many ways her treatment is plotted around it, but the words and discussion of the causes are often dodged largely because it's really not necessary to have a klaxon screaming SHE'S DELAYED! SOMETHING WENT WRONG IN HER BRAIN! I know she has it, doctors know she has it, nurses know she has it...why keep dropping it in conversation if you don't have to and it isn't going to help? The most frequent contact we have is with NHS physiotherapy for children who treat things holistically and symptomatically. So really, they are the ones who deal with it most closely yet because of their approach, it is beside the point what the diagnosis is because they concentrate on making things more comfortable and facilitating development and independence.

 So when we directly deal with it, it feels a bit weird.

It also brings back wave after wave of guilt. We don't know why she has it, but you can bet anything it is to do with her birth/prematurity. I know, in that rational world,I can't change the past and blame is futile. It doesn't stop the emotional sphere of the brain running wild though and slashing the bridges of sanity and reason you have built up. And normal parenting-guilt goes overboard. Am I being proactive enough? Too much? Should I be asking more questions? Looking outside the NHS package? Researching more? Forgetting more? When you start looking there is just so much information and like many things much of it is subjective and conflicting. So do you turn off and trust those caring for you whom you see every few months? Or do you try to forge your own path and hope you get it right? What is the middle ground and how do you stop going mad thinking?

I do my best not to dwell too much on the causes most of the time, the wording, the terminology. There is no point, it is irreversible and like so much of life, it is about what happens now that counts. The young developing brain holds so much plasticity that making an effort now can make a difference. It can't magically create strength where there is none or suddenly whip up a new skill out of nowhere, it can't cure but it can help forge new connections and slowly build up bit by bit to make things just a little easier. So that is what I'm trying to look towards; to focus on. The future. That scary unknown future. But that scary unknown future I could influence. It is just the past has a nasty habit of coming up and biting you in the metaphorical arse when you aren't looking. And that is what I find tough. That and continually accepting our world is not the world other parents dream of. It is like having a secret key to a new world and balancing on wall between the two, moonlighting. It's not a worse place, just different. And after all this is pretty good compensation...

 

Monday blues

I don't like Mondays. If Monday sets the tone of the week, frankly I am done with this week already. 

Today we had our appointment with the respiratory paed. We missed our own paed, but got the other senior consultant who is also pretty good and on the same page largely as our doctor. The appointment was by and large, productive. Wriggles had a lovely time playing with the toy truck (future mechanic?) and all hell only broke loose when she needed to be weighed. Unfortunately she must associate side rooms with nurses as synonymous with blood tests and fear, as in seconds, my chirpy little bean was a screaming, rigid, limpet who needed peeling off me. She was so distressed she was stiff as a board and still crying to be measured, so the nurse wrote down "uncooperative with height". I bit my tongue. FFS, she's fucking terrified, not being naughty! She is 2 and has been through more procedures than many do in a lifetime! I know she only meant it in a jokey way but it really made me bristle.

The actual appointment was very thorough. The immune results are not back but will be chased with a letter to the GP confirming if they request a booster vaccine and if so which one, the feeding they are happy for me to manage with help of the dietitians ("and keep hoping"), her tonsil size was checked and we went over her list of medications and checked dosages. We discussed her sleep study and went over sleep history and patterns and they notes even static in the daytime, Wriggles is a noisy breather. This had got a lot better during the autumn but has slowly crept back more and more. The consultant confirmed he thought it would be beneficial to removed tonsils and adenoids. The tonsils are a moderate size and the adenoids are quite large, and we are not yet at 'peak growth' period. He added it may possibly help the night refluxing, as she sucks in her stomach muscles to help breathe when the adenoids narrow her nasal passages, and the extra abdominal work put pressure on the stomach which combined with a lax stomach valve and tummy full of night feeds can aggravate reflux happening. So whilst it is far from a guarantee, it is a bit of hope. I have also read other parents with food aversive children relating that tonsils being removed helped with food consumption and swallowing difficulties. Again, a sliver but hope but sometimes a sliver is all you need to keep going. I have all the usual concerns about having a general anaesthetic and surgery, but a tonsillectomy/adenoidectomy is a pretty common and standard op and aside from GA the only real risks are infection which in our case is heightened as she will not be allowed oral fluids to help the healing site. But as the consultant said, "I have only regretted not sending some children for a T&A, in 15 years I have never made a referral for one I have regretted or has had negative results." That sells it for me.

The thing which did deflate me was another mention of fundoplication; surgery to essentially wind the stomach top around itself to form a wrap to keep contents from refluxing up. This surgery has been discussed on and off since the summer when aspiration was really taken seriously and the feeding tube placed. If the surgery was simple, I would happily sign on the dotted line yesterday. Control reflux? Eliminate vomiting? Be my guest! However, unlike the T&A this is not so simple. It is more major surgery and there is a higher risk attached. Side effects are far more common and the recovery period can be fraught. It is one I have read up on over and over, and whilst I do see the positives and know it has improved things for many, it is not one that sits comfortably with me. That said, we are running out of things to control it. This decision is one that does not have to be made imminently; the doctors are still undecided on whether it would suit us so we have so time to hope either the T&A, diet, maturity or something magical help to control or better still improve things. We had a chest X-Ray to check for aspiration during the latest reflux flare-up so need to to wait the results now in the post. Letterbox, you will become my new friend.

Talking of letterboxes, one letter plopped through this afternoon. A surprise letter about the previous MRI-which had been a disaster and one I was told there were no results from that would be any use and would need repeating. So to receive some results, was a shock. There must have been an image generated that the neurodisability paediatrician could read. It did cross my mind that there was a mix up, but we have not had an MRI before, only the two cranial ultrasounds performed in NICU. The letter read "surprisingly, there are no structural abnormalities. We will discuss further in clinic". It makes me a little nervous that even our development consultant was "surprised". He was clearly expecting something, I was expecting something, pretty much all the doctors we have seen over the last nearly 18 months have expected that something would show up. So I should, in theory, be dancing on the ceiling. No bleeds, no PVL, no lesions. All in all, pretty excellent. But all I can think is, so what the bleeding hell is causing/caused cerebral palsy? Where, are my promised answers? So many things have been chalked up to something we will never know, is this yet, another? Her history frankly suggests that at some point there has been brain trauma. It doesn't help there is no existing antenatal records, but birth and subsequent events are a hotbed for being able to pick things and say, maybe that. An MRI was going to tell me. To pinpoint. To flag up. To answer my questions. It has just generated more. For CP and spasticity there is something somewhere. But not on this MRI. 10-16% of children with CP have normal MRI findings. Maybe I just have to accept that this is us. An MRI reflects the structure of the brain, not function. I just can't help feeling a bit cheated and full of questions to ask. Does this affect the prognosis, the treatment, the diagnosis? Does this warrant extra tests? Do we need to look at genetics, blood tests, anything else? I have a month until clinic. By NHS standards, a month is not too bad. But it is going to be a long month.

So tonight I feel exhausted. It feels a full on day. I am fed up with dealing with things on my own. Sometimes, just sometimes, I wish someone would make me a cup of  wine  coffee and hold me while I toss and turn all night and tell me it will all be ok. 

I am really fed up of seeing my beautiful mischievous daughter love life with all open arms and for life to not always love her back but deal card after card of yet another thing. It seems relentless. 

Less than two hours until Tuesday. Let it be a more uplifting day.

Giving In

In July, I accidentally came off my antidepressants that I had been taking for over a year following a diagnosis of Post Traumatic Stress with secondary depression and anxiety. I had been feeling a lot better, was managing day to day life and my own feelings and so when Wriggles was rushed into hospital, asking someone to go back and collect them for me was not even in my top ten of priorities. In fact, it wasn't until pretty much the end of the stay did it occur to me I didn't have them. When we did get home, complete with NG tube, I was really a bit of a mess to actually register whether I should re-start taking them and was quite distracted by the fact that we had appointments and community nurse visits coming out our ears and that my mum came up for a fortnight to keep an eye on us (ie. to make sure I wasn't tipping the loony scales). I was so fatigued throughout the summer months from admissions, then surgery, then getting to grips with a gastronomy tube and then coming to terms with the CP diagnosis that the world was slightly spinning. Who wouldn't struggle? I got dressed (if mis-matched), left the house (because I couldn't bear to always stay in) and Did Things to try and amuse the toddler. We had some fun, survived the second birthday and then landed in hospital again and since then I have been struggling to bounce back. After a few horrid days, it all subsided and I wondered what I was making the fuss about. But since then, it has been creeping back up on me like a little dark cloud hovering over my head following me around and is not going away. I feel like I am teetering on a tightrope wire over an abyss, about to fall any minute into an untold pit. I can't switch off the worry, both irrational and rational, however hard I try. I can't relax or concentrate.

On Saturday, we went for a Halloween soiree (read: small gathering of 4 toddlers and cheese on cocktail sticks at tea-time) and I had a G&T. Because my previous medication didn't mix with alcohol, it had been virtually two years since I had had a drink with the exception of the day when I got the letter confirming CP where I drank enough rum to feel completely numb and send me to sleep. So, understandably, this one drink sent me a little squiffy. As I walked back at around 8pm with the Wriggly one in her pushchair dressed as a cat grinning madly, with firework displays going off around me, it felt like walking on air. I wasn't in ecstasy, just pleasantly cushioned with a warm and fuzzy feeling enveloping me. I didn't worry, I didn't obsess. And then the next day, it hit me. I used to feel like that at least the majority of the time. I used to feel like that pre-child. I used to feel that way when my PTSD and it's entourage was being effectively dealt with. I used to feel Alright, I used to feel Relaxed, I used to Smile without force. Maybe I didn't float everyday, but I didn't drag.

So I am giving in. I am going to plead with my GP to let me try medication again. I feel like I am struggling and I need a cushion to get me through this next bit. I have been patiently waiting for this 'low mood' to lift and it is doing nothing apart from drawing in closer. Memories, feeding tubes and hurt doesn't go away just like that. But if I could a little less like a zombie, that would be marvellous thank you very much. Please.

Long

Today, actually no, from last night has been a long long day. By Sod's Law, we got back from the doctors surgery yesterday after being given the all clear and then Wriggles' started coughing and coughing and bringing anything than so much as touched her stomach back up. Although I did lie down for some periods, it certainly felt like I was up all night, either rocking her, being sicked up on or administering inhalers or clock-watching between Calpol doses. At 8am I cracked and demanded another appointment, fully expecting to wind up in hospital but hoping we would get some antibiotics and be ticked off for being overly paranoid.

We ended up in hospital. OF COURSE. Where else would we go on a Tuesday morning at 10am? It's not like we would have a life to lead, is it?!

Wriggles duly showed them just how well she can suck in her chest and how hard she can cough and how pale she can go, all the time whilst giggling and fluttering her eyelashes. A bit of oxygen was turned on, they debated long and hard about admitting us proper or sending us home on the understanding we come straight back if needs be and they prescribed antibiotics to be followed on with prophylactic antibiotics all winter, snazzily accessorised by the flu jab. In the end, with borderline sats we still got to go home as luckily I don't live too far from hospital and as the paediatrician said "it's not like you haven't seen the warning signs before."

The thing that really came out of today is something that has crossed my mind, but something that now other people have noticed. When hooked up to a sats monitor, her sats drop when the feeds starts and when she refluxes. She coughs when she shouldn't cough and still regularly makes a "purring" sound in her airways and chest after some feeding. Despite the gastronomy, despite stopping liquid feeds, despite prescribing correct reflux medication....it looks likely that she is still aspirating, this time on the reflux which is still hanging around like an unwanted guest.

A bit of a blow.

The next step is to wait and see how much this affects her chest to see if it warrants further surgery in the form of a fundoplication, which is not without it's drawbacks. I knew the gastronomy was not a magic answer, I am just so fed up of things cropping up and seeing my little girl be struck by illness again and again. All toddlers get colds, but frankly I am fed up with the love-hate relationship I have with the dear old hospital. RVI, it's over, you hear me? 




I found this marvellous link from Life After NICU if you are worried about wintery illness in young children:

Cold Symptoms	Flu Symptoms	RSV Symptoms
Low or no fever	High fever	Low-grade fever
Sometimes a headache	Always a headache	Sometimes a mild headache
Stuffy, runny nose	Clear nose	Runny nose
Sneezing	Sometimes sneezing	Sneezing
Mild, hacking cough	Cough, often becomes severe	Coughing, wheezing, breathing difficulties
Slight aches and pains	Often severe aches and pains	Mild joint pains
Mild fatigue	Several weeks of fatigue	Exhaustion
Sore throat	Sometimes a sore throat	Mild sore throat, may be from coughing
Normal energy level	Extreme exhaustion	Decreased activity and irritability

To hermit or not to hermit?

Christmas is coming, the goose is getting fat... poor goose. Well, it may not be Christmas just yet, but it is certainly into the autumnal period and the good old RSV season as many preemie parents know and dread. Before children, I had never heard of RSV. Now it plays on my mind and sits there in the back of my mind from September until March, the official "season" of coughs, colds and general snottiness.

RSV, or respiratory syncytial virus, is a virus that is responsible for causing bronchiolitus. 75% of bronchiolitis cases to be exact. It is a very common virus. Almost all children are infected with RSV by the time they are two years old. In older children and adults, RSV may cause a cough or cold, but in 2-3% of young children it can manifest itself in more serious illness, sometimes leading to hospitalisation. It causes respiratory tract infections (mainly lower) and typically premature babies and children are one of the groups at higher risk of developing complications. 

It is only just September and already Wriggles is poorly. I have been trying to keep my cool, but this afternoon cracked and flexed my manically-anxious-parent muscles to get an emergency doctors appointment after Wriggles had a period of having a respiratory rates (breaths per minute) of 60 and vomited some tiny amounts of blood with a hacking cough. Typically by the time we got to the doctor, she was barely showing any signs of chest recession and wouldn't as much as cough. The GP was actually very understanding but couldn't at that point find anything to merit further examination after listening to her chest (lungs = nice and clear at 4pm) and heart rate, which was normal. Of course since we have got back home, the hacking cough is back along with vomiting and my best friend Calpol and the inhalers we have for not-quite-emergencies-but-not-routine situations are out in full force and sitting on borderline of warranting further attention. After a few hairy moments this evening, the minx is fast asleep snuffling for England and clinging onto Christmas Hedgehog for dear life. I truly hope this passes as quickly as it came. We are on day 5 of something resembling a cold, which surely should be around a peak, and can stay safely at home not that ....other "h" place.

But it has got me thinking and worried. Did we pick this up a soft play? Baby group? The park? Sainsburys? The metro? Where, and how the blazes are we going to last winter? I know all children get poorly, that you can't wrap them up in cotton wool and they need these experiences to build immunity but there lies the problem. My little girl has had so many periods of illness, her immune system is shot to pieces so she barely has any time to regain immune strength before coming down with something else. I hope the new g-tube will help reduce the amount of chest infections, but I suspect it will not protect her airways as much as I would like during the winter. I wouldn't mind (as much) if she didn't get so poorly each time. Each and every time we end up hospitalised on oxygen, nebulisers, and often IV medicines, and a sweet shop style selection of antibiotics. She doesn't "just" do a cold, she has to pull out the big guns and go into respiratory distress warranting anything from 24 hour monitoring to help from the emergency services.

So I am worried about winter.

Last week, I would have said we would stand our ground and keep up our social life to avoid going mad throughout the winter and thumb our nose to the colds doing the rounds. It is amazing how quickly you forget how terrifying a poorly child is coupled with a more terrifying medical history. This afternoon as she breathed really fast for an hour or so, I began shaking like a leaf with fear that things were repeating. Now she is asleep still but coughing as if she was on 40 a day and crying, rigid with discomfort. 

I can't take seeing my child wired up all over again.

More to the point, I am worried my child can't take being wired up again and again. how many times can one little person be pushed?

Part of my brain says, you can't just compromise life quality by staying hermits just in case a virus floats by. Then part says, and what life quality, is being rushed to hospital in the early hours of the morning to be prodded, poked and be scare-mongered by nurses performing blood tests for the next week whilst you have cannulas shoved up your nose because you can't breathe efficiently enough just because of a virus that floated by.

Being two is not enough to fight things off. Simply put, we don't "do" colds. What would you do?

Two Tomorrow

Two. She's going to be TWO tomorrow. TOMORROW. TWO.

I can't believe it.

I feel intermittently delirious with excitement on her behalf, and sick with fear as the memories race through my head.

Two years ago, I was pretty much without a care in the world.

Today, I have a bundle of giggles who also requires a higher standard of care than other two year olds.

Why hasn't there been a fanfare, why didn't a bell toll two years ago? How can it happen so quietly, so unassuming? One day a singleton, the next a mother. One day at home, the next in hospital. And conversely, one day in hospital, the next at home. 

Two years ago I knew little of heart ache and far less about love than I would have liked to think.

Two years later I know the dizzying heights of sheer joy and pure adoration and that love is not soft, it is fierce like a tiger. I know the line of despair, terror and consuming guilt.

A little under two years ago, I bought a book roughly around the time my daughter was in NICU or possibly just came out. The Heart and the Bottle, by Oliver Jeffers. I loved his illustration style, but the book made me cry instantly. It was far more grown up that his previous works, and dealt with love and loss. 

"Once there was a girl who was much like any other

Her head was filled with the curiosity of the world

With thoughts of the stars

With wonder of the sea

She took delight in finding new things

Until one day she found an empty chair

Feeling unsure, the girl thought the best thing was to put her heart in a safe place

Just for the time being..." 

And so, the book examines how when your heart is in a safe place, say a bottle, it seems to fix things at first. Maybe at first it is necessary. But as time goes on, it dulls the world around you. You start to think less of the stars, see less wonder in the sea, and new things are left undiscovered, the world slowly drifting further and further from your island. 

After the shock, and I hate to say it, but trauma, of having Wriggles, I was very afraid to feel. I was afraid to grip any emotion head-on for the fear it would consume me whole for breakfast. All through NICU, I was so desperate to feel something, anything. I felt protective, I felt fiercely protective, but I also felt numb. I felt like I was in a bottle, looking out clearly on the world but with a sheet of glass between us. I could shout but no one could hear me. They could see me, and waved cheerfully. But I could only stand, pressed up, and wish to be free yet afraid of what was out there. I wish I could say that when I brought Wriggles home, the spell was broken. I think very slowly it began to break, but I still felt so fogged. I knew I was in love, but who knew love was so painful, so fragile, so vulnerable and so closely entwined with a deep seated guilt that threatened to destroy things? 

I can't pinpoint when the moment was that things changed, and I found the key to unlocking things. In the book, the girl finds a little friend on the beach who easily unplucks her heart for her. In my life it was not so simple. I was slowly emerging back into the world and allowing myself to sink completely into a devout love with my child, free of any terror or hauntings of the past months of NICU or birth, when she abruptly ended up slap bang in PICU. I knew then what I had to loose, once she was there and it set a terror deeper than anything when I realised that the most precious thing to me might be ripped away again. It was so clear how much she meant to me then and that maybe I hadn't been being true to us both, when I had felt too afraid to love her without abandon. Those days until she was out of the critical period were the worst I have ever felt. Going to sleep with no snuffler by my side felt so bleak, as if the world had stopped turning and lost all it's colour, smells and sounds. I felt bereft, even walking to her cubicle, without her by my side. That moment, weeks later when she came out of her induced coma and I could hold her again was in glorious technicolour. Oh she was floppy, she was pale, she was weak. But she was mine. Mine, mine, mine. I will never ever ever let you go, baby girl. 

Of course, it wasn't as simple as that was that. Having my baby back with me, being back with her all the time was the most wonderful feeling ever and affirmed how much I had given over to her, but when we got home I struggled to deal with how things had gone and fell deep into a state of mental unrest coupled with cripplingly guilt that I wasn't making the most of things. I would walk along and cry for no reason, convinced that however much I loved her it would never be enough to make up for her little life so far.

I don't know when that stopped, but it did or at least got to the point of being manageable and I was able to tell my inner jimminy cricket to sod off from time to time. I began to go to baby groups again, to venture to exotic lands like The Park, The Seaside, Coffee Shops. And suddenly things improved. I began to have conversations with fellow mums and not feel a fraud or a headcase.  I saw my baby for being my baby, not a fragile being with too many miniature scars. I began to see that there was a chance, no a fact, that she loved me back. Last birthday was still a struggle. I was doing better but nearer the date became flustered with too many memories and kept nearly blacking out. This birthday, I think I am better. I am excited. I have done present shopping. I have blown up balloons with a faulty balloon pump: now that is love. I'm wearing my heart on my sleeve now most days. It's frightening because there it is, right there, free for the taking. It's not protected, it could easily be broken or damaged. But it's better than locking it away, isn't it? Better than locking me, us, away. I think. I'm not sure every single day or in every single situation. But right now I am.

Happy birthday in a few hours, baby girl.

Crying Out

Wriggles used to be an excellent sleeper.

I mean that in toddler terms. She used to want to go down far later and get up far earlier than I intended, and is a keen cot-bar rattler and has discovered that scraping nails down a wall is an excellent way of kickstarting sluggish mummies. 

Also, she snores and fidgets. If you didn't look, you may well believe I am keeping a drunkard chap with nasal issues in my cupboard. But no, on inspection, it is one peacefully restless toddler with the blanket over her head. I have shared a bed with her and it is not as relaxing or reassuring as I had hoped. She took up the vast majority of it and I was in danger of being under attack all night.

Still, for a person of her age, she has been a pretty standard sleeper. I would give her at least 8/10 and a silver star with room for improvement especially on weekend mornings and naptime. 

Frankly, I am blaming hospital for an abrupt change. Now, bedtime appears to have moved back to nearly quarter to nine in line with the nurses changeover of staff and any last ward rounds and obs. Fine, I can handle changes in bedtime. Something moved once can be moved twice. Naptime appears to be negotiable (it is not negotiable, Wriggles. Not yet) which is less than pleasing. But what rankles most is the crying out. The sudden cries of distress that pierce the night, a sobbing inconsolable Wriggles screaming in her cot. Most nights and nap times, my fiercely independent cheeky chops will only let go and nod off if I rock her to sleep like tiny little baby. Sometimes, it does seem like pain (gastronomy, I'm looking at you) but mostly like pure fear. And that tears at my heart. Is she crying because she is scared she is alone? Is she crying because she thinks someone is going to hurt her-again? How can you placate a small child who doesn't understand some pain, like necessary procedures, are for good even though they hurt? Does she remember and fear? Does she wake up, find no immediate mummy and think she has been left? Does she remember being put to sleep with the anaesthetic gas; she was clearly scared rigid, thrashing and screaming as she was lulled under? Or is it standard child nightmares of monsters and witches? 

Give me the monsters any day. I have both a broom, mop and whole pair of slippers to chase monsters away and coax them from under the beds, but doctors? Sorry Wriggles, I can't get rid of them.

Home Alone

And, so today is the First Real Day of being home alone, with a new tube. Although not that different from an NG, it feels a huge step. You see, the NG felt familiar. Yes it was horrid to be re-passed so often and we got a fair few stares when out and about, but it was what I knew. From NICU and from time and time again during periods of hospitalised illness and the failed plan A, I was fairly good at working and caring for the NG. I knew the pump and gravity feeds, I knew about aspirating and pHs. I knew what number it was passed down to (28) and that there was no point putting a silk (longer term, can be left longer before replacement) one in because they never lasted longer than 3 days against Wriggles' reflux. With the PEG, or G-Tube, we still have the pump, the same feed, the same volume, aspiring to the same pump rate, the same medication, the same port on the tubing line to give medicines, the same routine...but one big difference. It was applied during a surgical procedure, meaning there is a wound; the stoma site. Caring for a surgical wound is not quite the same as taping Hypafix (breathable adhesive) to a cheek. On a scale of hardness to do, it is hardly up there, just takes a bit more time in the day and extra care in keeping things sterile and clean. An infection broke out before we had made it out of hospital so she needs antibiotics twice daily and gauze over it to keeping it (and her clothes!) protected. Still, barely rocket science.

But my goodness it feels draining.

It is because it is the more intrusive physical evidence yet that a) there has been a rocky road and b) that is not going to go away any time soon? (The tube that is and rocky road)

I'm not going to sit here and amateur psycho-analyse my feelings towards tube feeding or anything else. It would be nothing short of dull and do no good at all. Let's just leave it at yes I am mighty glad for possibly the first time since leaving NICU she is receiving a sufficient intake of both fluid, calories and vitamins and minerals, yes I am really relieved that part of the battle is quits now and yes I am over the moon that the risk of aspiration pneumonia is reduced  but also yes, I hate it. It sticks out, it causes my daughter some pain right now and frustrates her because she can't understand why she is too sore to crawl or sit for too long by herself.

Presumably because anything using the core muscles disturbs the g-tube placement and niggles at the site, for the moment Wriggles cannot crawl or sit for long by herself. She can pull to stand and cruise for small periods of time and climb on my sofa, but as she is still weak needs watching like a hawk (3 accidents in half an hour this morning....) and frequently, help. Not that she will ask for it or thank you! I know this is a teething hiccup while her body gets used to everything and stops treating it as a foreign object, and whilst the stomach lining stops trying to pull back away. Still, it is sad to see my happy nutcase loose some independence and confidence literally overnight. Because of the increased vomiting, her feeds are a lot slower than normal so in some ways, it makes things easier, but in others there are not really words to describe seeing your tearaway attached to a feeding pump for right now, anything from 15 hours a day. We have read a lot of books.

By bedtime, Wriggles was finally able to muster some strength through gritted teeth to crawl a bit. Whilst attached to the feeding pump. Understandably she screamed, though as much in reply to me saying "Wriggles, please sit down" to it pulling. Thankfully today, all feeds have stayed down so I am hopeful to slightly increase the timings tomorrow as today there wasn't much longer than an hour between each feed. I'm hoping the antibiotics kick in soon and am looking forward to being able to catch a community nurse on Monday as the stoma is very much oozing and the tape used for the dressing seems to leave Wriggles with angry red marks. Would it be too much to ask for one thing to be straight forward?!

Still, I now feel a bit more confident than I thought I would. I started writing this at lunchtime, feeling like I was being put through a mangle (and a tiny one at that) and only a few hours on feel far more like a human being. Thanks to the fantastic Feeding Tube Awareness and their wealth on information and on-line tutorials and trouble shooting, I have worked out a better way of 'venting' the tube (removing painful trapped wind; minor bonus of having a tube) which causes more frequent vomiting and pain. Some friends dropped by around tea time, and when asked the inevitable "how long is it for?" I managed to neither snap nor cry when I said I didn't know: it could be a year, it could potentially be forever or at least the bulk of childhood. The short answer: however long it needs to be there for. Now we have gone and got it, I am not compromising my child's health or trivialising what may be a "minor" procedure but is rather an major adjustment. I know fully well that neither Wriggles not me will successfully adapt overnight and that because apart from no fluids by mouth, her dietary needs are fluid so will hopefully change as she grows, matures and becomes less aversive.

Who knows, I may even venture out for an adventure tomorrow...  Maybe!

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

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.

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.