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

26/52 Some Calm After the Storm

It has been a difficult end to last week. I want to dress it up and put a really positive spin on things, shrug my shoulders and say "hey ho, at least...." but I feel rocky and if I feel rocky, then Wriggles must feel very sorry for herself. She is hedgehog-ing away next to me in bed and my ears are a little bit afraid to sleep in case I don't hear her begin to rasp and wheeze, should it start up again. I'm not a hypochondriac, we have been in hospital. Yes, AGAIN. This cause: the common cold most probably.

It scares me that a cold renders my daughter terribly poorly.

It scares me to see her hooked up to monitors.

It scares me to see her suddenly dependant on oxygen and nebulisers.

I know she is bigger now, stronger, more robust. It's not that I am haunted by bad memories continuously exactly or that every nasal cannula brings me back in an instant to intensive care, be it neonatal or paediatric. But every time you see your child surrounded by tubes, wires and equipment, it chips away a little at your heart with the unfairness of it all. I know that despite the admissions, I do now have a take-home daughter but it doesn't stop the grief seeping back in when I thought it was shut out.

Most parents have the pleasure of seeing their children breathe in and out, wiping noses and bothering the GP. I, with thousands of others, have had the privilege of getting exclusive access to the club of parents who haunt the world of ambulances, spout medical terminology, have open access to hospital and being able to spot respiratory distress and jump on it. Or, try to jump on it only for your efforts to be futile. Best to get to hospital then double quick.

It is moving towards a diagnosis of asthma: although her bouts of respiratory distress are only connected to infections, either viral or bacterial, the fact that her episodes are quite severe when they do happen and respond to bronchodilators are key factors to the doctors. As one said, it could be that her preemie airways are hyper sensitive, it could be reactive airway disease, it could be recurrent RSV infections or it could be infant asthma: at this stage, as long as she responds to treatments when needed, what it is called right now is beside the point but it wouldn't hurt to throw a preventative inhaler of steroids into the mix to see if it helps. I am so glad that there is a plan of sorts forming now. It is a relief to know that both we are being taken seriously now and that people care about what happens to us. It is good to hear medical professionals saying enough is enough, this is getting silly.

As the NHS have been so kind to us, we earned our keep as normal by providing a case study for groups of new medical students. One of the doctors we have come to know well looked very pleased to see us as we ticked multiple boxes to pick the brain of his newest protégées. We patiently sat and recounted back the last 22 months to a circle of scribblers eagerly jotting things down and tried to ignore the sympathy in their eyes. What did slightly surprise me, was that more than one consultant this time was more open than they have been in the past. A lot of time it feels like has been put into persuading me I overthink some aspects which have been laughed off. But this time I finally found out that a) they officially have her down as globally delayed and b) they are still considering aspiration as a cause of respiratory troubles. These sound tiny things in the grand scheme, but somehow it is a relief to hear it in black and white. Global delay does not retract in any way from her progress that she has made and is continuing to make. Although it is a little surprise to hear that we are now getting names for things, it also makes me feel a bit more comfortable that finally we all seem to be on the same page so to speak. And just to prove that doctors don't know everything, we also did a brief class for the medical babies in sign language for small people!

And at last today, after a weekend of feeding my syringe and reliance on inhalers and calpol, it seems we have turned a corner.

Long may it continue.

I prescribe a trip to the park....

Fright

Yesterday at work, I had one of the more enjoyable tasks I do: filming rehearsals with the dance company for the new piece which is being choreographed. The new production is a telling of favourite fairytale Rapunzel, originally a European folk tale that was collected and retold in the Brothers Grimm book in 1812. There are several variants of the story which pre-date this, including Petrosinella in 1634 and Persinette in 1698 which all have in common the story of a witch stealing or bargaining a dearly wanted child away from her parents and locking her in a tower until a prince finds her and begins to visit her by climbing into her tower from her long hair. 

As a child reading the story, the bit we all focused on was Rapunzel being in the tower and sneaking her prince in while she falls in love before being banished by the evil witch: the stuff of drama and romance. As a more mature understanding, it is quite a complex story and there are more illicit and darker undertones. In many variations of Rapunzel, she is banished because she has become pregnant herself, which is how the witch or Dame Gothel figure finds out about the nimble-footed prince. It is as much about desire, sexuality and fertility as it is about princes and princesses and good conquering evil. But before this section of the tale, is the beginning whereby Rapunzel leaves her parents, which before I had never given much of a second thought to. Of course, it is just a fairy tale and has no basis in reality, but it is powerful the notion of parents giving up their child in any form, fictitious or otherwise. As I watched, I thought and reflected as a mother on how it might be to have my only child snatched by a sorceress (as you do). A lump rose in my throat-as a parent who has been through NICU I know all too well about separation and the fear that you may never get your happy ending. The idea that I might have lost the sunshine in my life made my pulse race and my thoughts strayed to real life parents who for many assorted reasons have either been separated from or lost their children.

The studio was warm and the dance was entrancing and emotive, and I happily sat with the camcorder in the corner when my manager walked in. She came over and said in a low voice.

"Your childminder has just rang; she's concerned about Wriggles."

My childminder never rings.

She has only rung about once before in over a year she has looked after Wriggles. She has a remarkably high threshold for sick or cross babies and is full of common sense and does not take things like this lightly. She will exhaust every avenue before ringing.

My little world suddenly slowed down and came to an abrupt stop.

I ran up to the office, stubbing my toe on the way out. Pelted up the stairs and shaking, scrabbled to find the phone and her telephone number. My hands fluttered and my heart was in my mouth as it rang.
Wriggles had had one her "moments" again. No one is quite sure what causes them, but every now and then she will get horrendous and prolonged coughing fits out of nowhere and become very breathless and chesty sounding. You can audibly hear copious amounts of secretions rattling around (mostly transmitted upper respiratory although they can also be lower respiratory too, particularly in her right lung which is the most scarred) and her breathing becomes very rapid with recession. Sometimes if she makes herself sick, they pass quicker but this is by no means a given, and it is usual for them to last several hours at a time. Although they have some similarities with asthma attacks, doctors are confident that it is not asthma. To me they seem to be connected to sleeping or feeding and the doctors have said it may be a side effect of reflux and chronic lung disease that hopefully she will grow out of in time. It could also be as her airways are still very narrow as a result of prematurity that any catarrh can block them very easily.


I left as quickly as I could, losing one sock in the process (later located in handbag: no idea how). Wriggles was calming when I got to her but still very chesty and breathing fast. She had not been able to take any fluids to help because of the coughing and chestiness and as I was nearer to the doctors than hospital I decided to cross my fingers and take her there and hope it was the right decision. Luckily it was, and we got to see a doctor who has seen these episodes before with Wriggles. It was beginning to pass after about two hours by the time we saw him: typical! He was very understanding though and found an ear infection and catarrh as well as advising use of inhalers and antibiotics for the next few days. Panic over... We returned home via the supermarket with some ice cream as a treat.

Wriggles went off to bed with some persuasion and I let out a long breath. Compared to some of Wriggles' escapades it was so minor. But there is nothing like reawakening fear to put you on high alert and dredge up memories and anxiety. Having seen some pretty horrible sights of Wriggles being on the edge that are burnt into my memory, every tiny and slightest threat brings them back to the forefront. Do I think that Wriggles having an increased work of breathing for a few hours will send us to Intensive Care? No, I do not. I know what merits an ambulance and an emergency and what merits scanning the shelves at Boots. I don't automatically assume that every single infection is life threatening. But living with memories is a curse as well as a blessing. Because for a split second, fear overpowers love and knowledge and you realise that you cannot ultimately protect your child from everything, try as you might. And that, is scary.

Home Sweet Home

Oh little home am I glad to be back!

After writing my last post, we ended up back in hospital within hours. Wriggles was refusing all hydration and vomiting medication and syringes of water back up. After a breakthrough with a spoon of runny ice cream, I was convinced we had crack it, but soon this came up with copious amounts of dried blood. As the afternoon wore she grew floppier and more lethargic and I began to panic. Luckily we still had open access after being discharged just hours earlier, and a phone call to a nurse confirmed they were keen to see her. Being a pessimistic sort, I decided to take along some jimjams and spare clothes as well as a washbag. Just In Case.

"Normal"

Yesterday morning I was idly listening to the...gulp...Archers omnibus, whilst chasing a newly crawling Wriggles around when I heard the storyline about a heart attack. Bloody Archers, first they have the premature baby storyline (reduced me to hysterical tears over the dinner table at Christmas just weeks after Wriggles reached 'term') and now one about hearts! A lump rose to my throat and I was transported back to the Intensive Care waiting rooms of my father and beautiful daughter within seconds, scared and tired in an empty clinical world.

I also fittingly read a discussion on "normality" after trauma and if you ever return to your former state or feel like you fit back in with the world. Can you, and are you, 'normal' again?

Survival

My family, I reckon, are born fighters. 


Between my immediate family between us we have survived pneumonia (repeatedly and in varying severity), multiple organ failure, sepsis, cardiac arrest and a stroke. The worst culprits are my father and my daughter. 


Three years ago my father wound up in Intensive Care after taking a turn for the worst with what his GP thought was gastric flu. After progressively deteriorating, he was taken to our local hospital where they grew increasingly concerned. Gastric flu or not, they were concerned about his heart and decided to transfer him to a larger hospital with an outstanding surgical team. It happened very quickly; I was travelling down from university as fast as I could and throughout the few hours of my trip he was sedated to preserve his energy and I arrived just before the ambulance did, to transfer him to London up the motorway. We were prepped as to his immediate emergency surgery to repair his heart, which had been damaged by staphylococcus and not gastric flu at all, that was ulcerating and eating away at the muscle. There was a 33% chance of success, but without it, the doctor gave him 24-48 hours. That train journey my mum, sister and myself took was fraught. We were on a knife edge and raced to get to St Thomas' hospital. Once there, we discovered my father was not. We were distraught and immediately thought the worst. A phone call revealed a delay; the local hospital wanted to stabilise him before starting out to give him the best chance.

More Grey Hairs

There has been a pause in any posting due to my little troublemaker deciding it is once again time to visit, as Grandma calls it, the H Place.

At the very end of September, Wriggles had a very minor sniff but nothing out of the ordinary. Our physio came out on Friday 30th and at the end of a session listened to her chest and was perfectly happy. She was a bit of a grump at bedtime but nothing more. However, as the night progressed things went very downhill, very fast. She could not settle and quickly developed a hacking cough. Calpol and inhalers and saline drops did nothing and the poor mite could not even take water if she wanted as would just cough, choke and vomit. All through the night I held her upright, rubbing her back. As the hours wore on, she grew palers, clammier and her breathing gew decidedly more laboured. She was vomiting consistently (delightful) due to the cough. In the early hours I had had enough. After beginning to bring up bile with fleck of blood, I rang NHS Direct in a panic who sent us along to a&e. Oh dear a&e! How I have er.....missed it. Since the weekend previous. Oh well. 

Mind you, it has been a while since a middle of the night dash. Unfortunately it was quite reminiscent of when we had the dash that culminated in the infamous PICU stay; whereby I bundled us into a taxi who was a driven by a chap called Maxell Onions (you can't make these things up) who drove the wrongway down a slip road onto a major A road and would go right every time his sat nav said left.......

Once there this time, a nurse eyed the invalid warily muttering "She looks quite short of breath". She effeciently whisked us around to the room that brings a chill to my spine: the snappily named 'resus'. Bays of resusitaires, with monitors, ventilators, emergency equipment for life-threatening occasions and such like. Wriggles, who was slightly less wriggly than normal, laid on a adult bed which of course dwarfed her ridiculously. She was quickly hooked up with ECG leads and an oxygen pulse monitor. As suspected, her sats were low and her heart rate was looking a bit silly. Bucket-loads of oxgen with nebulisers were administered whilst different medical staff ran around waving themometres, trying to take blood tests and piece together medical histories (that was the easy bit. One doctor walked in "Oh hello!! It's you two again...what are you doing here? Oh dear...." and was able to bring everyone else up to date). As the shifts changed over and breakfast dawned round, Wriggles was more normal-coloured and trying to eat the oxygen mask and was showing far more acceptable numbers on the monitor. Whilst they tried to work out whether to send us home or keep us in for observations, we got ready to go round to the Day Unit rather than take up space in a&e. 

Off we went, pushing the big bed along with an emergency oxygen cylinder Just In Case. We got through the first set of doors from a&e and suddenly the newly-stabilised patient deteriorated infront of our eyes. Within seconds she was labouring breaths again, recessing so much you could see all her ribcage and muscles and her heartrate shot through the roof. Casualty-style, we quickly all jogged into the second Resus room of the day. More oxygen, more nebulisers.............. This time, it took hours and hours for her to reach anything nearer stable. A blood-gas had them debating whether to send her up to High Dependancy straight away or to give her the benefit of the doubt.

At least that made the former decision easy: we were definitely staying in.

In total, we ended up in hospital for just under 3 weeks. As no definitive infection seemed present, the likelihood is that Wriggles aspirated something. There has always been a slight infection in her right lung on X-rays, but normally this is not the root of problems. After the initial weekend, where she was on oxygen and IV fluids, she was weaned off both. A team of paediatricians decided that the likely explanation was that due to her cardiac arrest whilst being ventilated for pneumonia aged 6 and a bit months, her swallow coordination is sometimes defective resulting in infrequent aspiration. Due to the fact she already has Chronic Lung Disease (Broncho Pulmonary Dysplasia) and a history of respiratory tract infections, they decided that this combined with her notorious solids aversion and reflux were all grounds to be fed nasogasterically for the forseeable future to allow her tissues to renew and her brain to mature. We were referred to speech and language who observed a one-off oral feed and agreed that this was a good idea. Just to be sure, they booked a fluroscopy (moving X-Ray, like a barium swallow) for the following week. In between this, Wriggles did catch a gasteric virus which put us in isolation. 

Once recovered, we went for the fluroscopy which confused everyone. There appeared to be no swallow problem. She did have a peculiar reaction to a puree but not one that showed any obstruction, aspiration or allergic reaction. The doctors shiftily withdrew to decide on a New Plan. No one quite knew what to do. The respiratory team had been so confident that they had discharged us from their care and handed us onto SALT, SALT now wanted to hand us onto someone else... They had just spent two weeks training me in nasogasteric feeds and setting up a community support plan with the view of ng feeding for the next twelve months minimum and not ruling out longterm PEG feeds. The respiratory team, neurological doctors, developmental paediatricians, physios, SALT had been sure of aspiration being the cause. Over the next few days we saw an array of paeds all with their own take on things. The inconclusive evidence looked shockingly to be.....drumroll.......it was all a result of prematurity complicated by pneumonia which was a most likely a complication of prematurity! Excellent. I could have guessed that myself without spending weeks in hospital undergoing a barrage of tests.

Oh, and she might have a milk intolerance. Or she might not. It could be the reflux.

So with that, we were released into the outside world again. Over the weeks, the seasosn had changed from people in shorts to people in coats, mittens and umbrellas. The air was chilled and afternoons suddenly grew dark.

So now we are back at home as normal. The ng tube, for the moment, is out. We are on high-calorie soya-milk and an continous antibiotics Just In Case. During hospital, Wriggles has perfected sitting unaided (what else can you do in a very small room you cannot leave in case you contaminate people?) and has developed a love of shredding important bits of paper and newspapers I have not yet read, and also discovered the joy of banging on cardboard boxes. I have returned to work and am trying to remember exactly how many marbles I had a few weeks ago because I seem to have less now... Almost a year ago in Special Care I believed, naively, that leaving dear old Ward 35 was the end of the premature experience. The birth and NICU/SCBU had left me in deep shock and for me, discharge symbolised a new beginning. Hope. A light. A world free of clinical procedures, antibacterial gel and feeding charts. A world where I stopped being a rabbit in the headlights and became A Real Mum. Wriggles would have soon reached term and no longer be 'a premature baby'. This began  to wobble when a week to discharge they decided she would leave on oxygen. But I still clung to this ideal of it being the fairytale end. 

Of course it isn't. I'm sure some parents do leave and leave it all behind in the hospital reception with the overpriced crisps and tacky cards. But it often feels as though we never escaped the world of prematurity. To look at, you would never guess she was a premature baby, far less a 27 weeker. But the oxygen followed by frequent admissions from respiratory "incidents" have been a haunting reminder of prematurity. Each seems to invoke the trauma of the previous. This last admission has particularly triggered the memories of PICU: the weeks in a different world, roaming hospital corridoors at night, the eerie quiet of the 24 hour Costa Coffee at midnight. If I think too much, I hear the hospital machines with perfect clarity. Of course, if the alternative was to not have my darling Wriggles, I would go through it all again with hesitation. Yes it has been traumatic. It has shook my faith in the world and a sense of right and changed my outlook of life. But equally, my darling daughter has shown me a kind of love and joy that I don't believe can be equalled. She is better than the tastiest biscuit and more fun that running down a beach in the sun. When she smiles at me, I can forget the things I've seen and hours at a bedside. At the end of the day, miraculously, she seems free of any condition and utterly perfect. I know time is a great healer; it will heal my memories and will renew the cells in her lungs and rest of body and build up her immune system to make her stronger. Time will ensure she grows up and grows strong, away from being a fragile, premature baby. A year ago, I could have put her in my pocket. Now at 14 months old, we are not quite out of the woods of the whole experience but I am dreaming of hope again.