Feeding Tube Awareness Week: day one, our story

Our first experience of tube feeding was like most preemies, in NICU. We had to wait weeks for Wriggles to be at the gestational age whereby she could suck, swallow and breathe at once and even then it took weeks to build up her oral feeding, ml by ml as she tired easily. We graduated without the tube though and settled down to a turbulent first year of life with the added bonus of frequent and projectile reflux. After her first foray into PICU (Paediatric Intensive Care) shortly after weaning had commenced with relative success, Wriggles lost interest in solids. She didn't just loose interest in it, she went berserk. At around 8 months old, I could not offer her food to eat, touch or play with, I could not put either empty or full utensils near her and I could not eat near her myself as she would scream and scream as if in terror. I was loosing my mind with worrying-my only consolation was that our childminder reported the same difficulties in trying to feed her also, so even on the darkest days I rationally knew it was probably not entirely me doing something wrong. By her first birthday, Wriggles would very occasionally and with much reluctance take small amounts of yogurt off a spoon and her bottles. Her coordination was still off to self-feed and at this point she was still not sitting which didn't help brilliantly either. "Fuss pot" didn't even begin to describe her attitude towards bottles either and she self-weaned off using a pacifiers as dummies began to make her gag and subsequently vomit. During the times we were home between hospital admissions, my flat was a homage to washing vomit out of every conceivable item of clothing or furnishing and when she went to bed I would sit and cry. Shortly after she turned one, we had a fairly serious hospital admission. It was agreed her feeding difficulties were getting out of hand and there seemed to be a very viable link to her repeated chest infections. She would go home with an NG tube.

We stayed in hospital for nearly 3 weeks whilst they ran some tests, she kicked the infection (and required oxygen) and I was trained how to tube feed. On the last day, a consultant decided to scrap the plan and re-try forcing the issue with oral feeding, different formula and a new course of medication aimed at controlling the reflux which was still at large. We were promised community help and sent home with instructions to keep stuffing her as much as she would take. The "help" was patchy and it continued to be a struggle. We tried several formulas to try and get on top of weight gain and got the reflux to a manageable level. Solids however were another issue. Over the next 9 months I tried so many things to move things along. They didn't budge. She would drink nothing except from milk out of a bottle with a specific teat and gradually she began to drop the levels she was drinking. Whilst I never had fears about hydration, her weight was another story and it became obvious that whilst the milk might be nutritionally complete, she just couldn't or wouldn't take enough of it to satisfy her body.

Looking back through photographs, I do sometimes wonder if I have got our story quite right. So many pictures are Wriggles with food; Wriggles painting herself or the chair with food; Wriggles in a cafe... The reality of course is that these relatively happier or chilled out times were SUCH high points that of course I whipped the camera out. Each time I had no idea if it was a fluke and if it would be months or ever that the time in question was to be repeated and I wanted hard evidence it could happen to help me on the darker days when I felt like I had failed my baby and wonder if we would ever get the "normal" experiences that are associated with feeding.

A (very rare) eureka moment:

This isn't a great picture, but Wriggles was getting skinner and skinnier. Prior to getting the tube for good, she began falling gradually then speedily through the centiles on the all hallowed growth chart. Even allowing for corrected age and periods of illness, she had gone from being your average 50th centile kiddo to sitting at the bottom and not looking like she was going to pick up any time soon. You could see her ribs and her arms were like twiglets. The last time we saw her dietitian before the admission, when she picked her up you could see her face fall. She said there and then "uh-oh"; I later found out she immediately had emailed our paediatrician and advised at the very least NG top ups. Fate, or rather Wriggles and her preemie lungs had other ideas though and we soon were on an NHS mini break again for most of August 2012.

 Then this happened:

Wriggles was not happy about being NG fed. I was not happy about her being NG fed. The community nurses who had to quite literally sit on her to re-pass the NG tubes she refluxed up daily were not happy about her being NG fed. But goodness was I relieved we at last had a plan. I knew instantly that tube feeding was the right thing to do, because when the consultant told me that we would be going home with one and that this was going to be our new normal for the time being at least, all I felt was sheer relief washing over me. I might not have jumped for joy but I knew we were at the end of the line: we had tried, god almighty had we tried, but things were not getting better and we were getting into riskier and riskier territory playing Russian roulette with Wriggles' health and that is not on. Tube feeding is not an easy option, it is a last resort. But when you get to that place, having a tube is like being in Monopoly and getting an out of jail card.

Luckily everyone decided that an NG was not a long-term solution and so we got slotted into surgery pretty quickly for a PEG (G tube)...

...which made things much easier! Whilst surgery is never easy and I found the initial week a struggle, it was the best thing all round. When Wriggles was first in recovery coming round after the anaesthetic and screaming the place down (whilst the nurse was reeling off all the pain relief she had already had which was not touching the sides...) and I saw the PEG dangling out of her beautiful previously unblemished stomach, I felt sick at what I had consented to have done. However, once the pain had settled down for her it was obvious that the new chapter we had started was a good 'un. Like NG feeding, we had to settle down into a pattern of working out what was the best rate for her. At first she did not tolerate bolus (quick) feeds well and for quite a while we relied on the pump., Her volume tolerance, even now at 3 years old, has always been on the low side and I still have to rely on gut (ha!) instinct, common sense and a quick assessment to avoid my carpet getting covered in regurgitated feed.

Last summer we swapped the PEG for an AMT mini button which I now love. Wriggles calls the extension her "tail" and most of the time is pretty nonplussed about being tube fed. The truth is, she probably can't recall any other way. She never ate enough solids, if any at all, for them to provide even a contribution to calories and nutrition to fill her up and her drinking was tailing off and warning signs of aspiration into her lungs were sounding like a klaxon so there was not a great deal of choice. We still have a long way to go with introducing consistent feeding and upping volume anywhere beyond "tasters" and have only just begun to reintroduce fluids. But she is healthy and the main thing is that she is getting the nutrition she needs, and also the medications she requires. Since we began tube feeding we have ditched the complete high calorie formula she was fed round the clock and switched to a blenderized diet. Given her lack of eating, I wasn't 100% about how her body would handle solids but after a very gradual changeover she has been fine with just about everything as long as the volume isn't too much and it isn't overly fatty. She how has 3-4 boluses of pureed food down the button at conventional meal times and fluid boluses in between; anything orally is a bonus and she will eat crumbs of cheese scones, toast, Pringles (my nemesis, I detest them now), the arms and legs of gingerbread men and nibbles of sausages. I still can't tell you exactly why she didn't before and still doesn't like eating or why we still get into cycles of all out refusal. The tube is as much here to stay as it was when it was first placed, but that isn't to say it will be forever.

This week is Feeding Tube Awareness Week, with the brilliant theme of "nothing will hold us back". Getting a tube can initially throw a proverbial spanner in the works, but once you find your groove it seeps into your routine until it is another way of feeding. We might still be too new to add the "just another way of feeding"; it is after all a very emotive and physically obvious difference. But feeding tubes are necessary for a huge variety of reasons. They may not look like it, but for many children and adults are not just life saving or nutrition related devices, but are compassionate. Getting a feeding tube has allowed my Wriggles to become to self-assured, mischievous and energetic little person she is today and that is why I am passionate about this week.

G-tube 6 weeks on

This *points up* makes me very happy.

Now, just ignore a) the mess b) the fact my child is only half dressed at gone noon and c) the fact she is covered in paint (one of those days when you have to pick your battles. The bath can wash it off later).

That is a child who has suffered terrible oral aversion for eighteen months and as a result is now tube fed. Now obviously, she did not eat the whole hunk of bread. In fact, I think the area consumed amounted to about the size of my little finger nail (and I have tiny hands) but the point is she is going for it.

We have had the g-tube for about six weeks now. I can't believe it is only that long; it feels as if we have had it far longer. I think by the time we had it, Wriggles so badly needed it, that it fitted in perfectly because there was no other option such was the struggle of feeding, gagging and vomiting. The first week was a shock to the system. I knew how much we needed it , knew how much better it would be than the NG we had been making for with for a few weeks, but I wasn't ready for how taken aback I was by the sight of it. Something artificial and permanent sticking out of your child's unblemished perfect skin is a shock. Even if you know how necessary it is, it still got me. Let alone her. I really struggled with how to communicate to a small child how she could be put to sleep, then back up in pain with a lump of plastic sticking out of her stomach and at that point, an ostomy bag. The bag went, feeds were cautiously resumed and we got back home. After a few days of feeling sorry for ourselves, we picked back up. That is to say, Wriggles picked up; she clearly couldn't care less and her attitude gave me a jolly good kicking. If a not-quite-two-year-old could cope with this, then her twenty-something mother was bloody well going to join in. Of course it isn't that simple-as a mother and an adult I am effectively "feeling for two" the emotions, the presumptions, the hopes and fears and everything that is attached to coming to terms with the fact that normality has flown out the window.

We have had some teething troubles with the tube; two infections needing antibiotics and dressings, and hypergranulation tissue making an unwanted appearance. Fingers crossed, it has now all settled down and things are pretty good. I have lost any notion of caring and have primed feeding sets, vented, flushed and hooked everything up on public transport, in lifts, in H&M, in the park, coffee shops, baby groups and in an art gallery. We have got some funny looks and stares out of curiousity but have not yet had to deal with any questions which is a relief.

When the tube was placed, we were still very much in a not-eating cycle. Wriggles is prone to being a little more receptive and trying some limited foods for a few weeks, then frequently going for months with complete refusal to take anything by mouth, touch food or acknowledge anyone eating. Even if she is not all-out refusing, she will take miniscule amounts of familiar food such as a handful of crisps a day. Hardly sustaining! Just over a week ago, we started a period of trying food again. I had forgotten how intense the heady bliss is when your non-eating child willingly takes something. When she reached out for something I nearly fell off my chair and had to hold back tears of relief. Since then, I have tried to capitalise on her curiosity especially in the finger food department and in the last week we had tried:

• Mummy's chocolate brownie
• cake crumbs
• bread (including toast)
• rice cakes, particularly bright yellow "cheese" flavoured ones and salt & vinegar
• pizza
• gingerbread
• hand cooked crisps (not by me, by M&S). Worcester sauce got the thumbs up, parsnip did not
• scones

In the last few days, she has also decided to let me spoon feed her limited things (yoghurt, mango, raspberry, banana or blueberry puree) too which is brilliant. Whilst I am over the moon about independant eating with finger foods and expanding that area, I don't want to take away from her ace progress but I will stress when I say "eat" it is far more from a sensory and curiosity point of view than a nutritional or otherwise perspective. The amounts that are chewed, and not always swallowed, are very small and are far more about practising her oral skills. Friends who have seen her put food to mouth simply do not understand the problem. The "problem" is that she might only put one thing to mouth per week if that, and there is no guarantee she will actually masticate, swallow and digest it. Even if she does, we are a long way from her actually eating orally any calories, as the time it takes normally expends more calories than it creates. So if I was to be super-keen on emphasising the calorie side of things (which for the record, I am not. It is very early days, and thanks to the tube we have a nutritionally complete formula which provides all her calorific needs to maintain and increase weight to be able to facilitate hopefully increasing food intake eventually) then the only way to do so would be spoon-feeding purees which she can take a reasonable volume of, for someone not used to eating. On a good day, she can take about 60g (half a baby pouch or jar or a small fromage frais pot) comfortably before she looses interest or gets upset. On a mind-blowingly good day, she can take just under 100g but these are rare and to be celebrated in the extreme! Those sort of amounts and the likelihood of matching those calories are at this point only the stuff of dreams when it comes to finger food or self feeding. But this is why I now love the tube: the pressure is off and it doesn't matter. We have time. We can do it at her pace, and if that takes an age it is ok.

For the time being, we also seem to have her reflux under control which presumably will only help her willingness to try food. She also seems more comfortable in herself and my washing machine is enjoying a longed for break from twice-daily service. I have now been doing this long enough to realise that this isn't a "fix". Refusal and the return of more aggressive reflux may be around the corner. It's sad but true, and I have to acknowledge this. This isn't a defeatist or pessimistic viewpoint although it might seem this way. After the road we have been on with feeding, reflux and tubes to date, I know we are far from the end or even the middle. And it pays to be realistic. It pays to set new goals or everyone becomes upset and frustrated. So if we get through more than one fromage frais in a week and I get my dinner played about with by someone that isn't me, then we're winning. It may not seem much, but to us it's huge. It has taken me a long time to accept this and adapt to realising my baby girl is not as straightforward as I might like but not any the worse for it!

One Week On

So, we are one week on from being home alone with our new PEG tube and I am pleased to say that actually, it is a lot easier than I feared! Last Friday, after getting home exhausted from a sleep deprived few days and understandably cranky baby, I was so worried that this was the icing on the cake and I just couldn't cope. The phone was on standby, ready for me to ring the hospital and plead that I would have to move there and become a permanent in-patient as we just couldn't do things at home.

How wonderful a new day is though-this week we have gained in confidence, Wriggles has regained her mobility and I have set up and disconnected the tube and feeds in shopping centres, museums, cafes, the bus stop and in the playground, surrounded by people. Whether a good or bad thing, I couldn't care less and actually once I am used to it, it is more discreet than I originally thought and people are just as likely to stare because my beautiful nutcase is cackling away in the buggy pointing at things and throwing Noodle the hedgehog over the side as opposed to wonder why an earth I am bobbing around with a syringe and a beeping buggy.

Climbing skills? Check! Wriggles regains her confidence and ability to move about

The most difficult thing is keeping Wriggles entertained for the duration of a feed. Luckily, the large chunk of her feeds is contained in a 10 hour night feed so we only have three daytime boluses, one of which can often been coincided with nap time. At the start of the week, I simply could not get any of the boluses, even the smallest amount, under an hour and they would often stretch on for longer to keep Wriggles from bringing them straight back up. I have slowly managed to tweak the rates up, and whilst they are not quite up to the half hourly rate we had before, they are more manageable now and things do not seem half as depressing now there are longer stretches and it no longer seems Wriggles is attached at all times to a feeding pump! The best thing, without a doubt, is not having to re-pass a tube regularly. The nasogasteric tube was re-passed so frequently and was horrible to see. But no more!  

The New Teatimes: running after toddler wielding feeding pump

Bedtime has slowly become easier. I have managed to bring bedtime forwards a little to something resembling our pre-hospital routine and am hopeful I will be able to soon do the same for the nap and to start having a mildly more structured morning. Living in pyjamas is beginning to take it's toll, especially when realising the rest of the world does not regard 9am as particularly early. Wriggles will now fall asleep by herself again, rather than the beginning of the week when she needed rocking to sleep and a great deal of comfort throughout the night. Her stoma infection is clearing up nicely and she is far less confused or distressed. I am still feeling exhausted after the stints in hospital. It is hard to switch off, and if I go to bed at a sensible time, I often lie awake for hours. Like everything else, it is getting easier just not at the fast pace I would prefer. But like everything else, I am getting used to it. Slowly. The tiring part is that whilst my toddler might need some extra care and things doing compared to another toddler, she is still that: a toddler. A full-of-beans, opinionated, lunatic, mountaineer-to-be, cheeky, frustrating, wonderful toddler. Does she care she does some things differently to her friends? Does she heck. Today we met up with some baby friends in the park, and it was so lovely to see them all excitedly pointing at each other and one of them exclaim "Lis! Lis!" at her (toddler language for her name it would seem. Other toddler-speak highlights from her friend included "Can you say please?" "Mice"). I went home feeling refreshed and like a bit of the worry had ebbed away.

So...here is to another week. Cheers!

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!

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