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?

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....

Stupid

Generally I have a lot of love for doctors, indeed most medical staff. I have felt very well supported by both specialist teams and also from my GP surgery. My previous GP surgery was about as much use as a chocolate teapot and the Out of Hours doctors range from rather nervous to a bit hopeless in my experience, but generally my surgery have demonstrated much that is brilliant about the NHS. The GPs have been very positive in supporting my mental health, and in the main have been very sensible about Wriggles. There however nearly always is a duff one. Today we got him.

Wriggles has a cough again. A cough that is full of mucus and dried blood and that is causing her to be a blimming nightmare to get any fluids or medication in. We have been up through the nights and been reliant on our trusty Ventolin, which while usually does bugger all, now she is a bit older, is quite good for semi-emergency use at home, before having to bother the doctors. That and vomiting are the only things keeping us home, as the coughing fits have a nasty habit of inducing dusky colour changes and labouring her breathing as well as clearly causing acute and prolonged distress. So our little inhaler friend has been living within arms reach and being used fairly frequently. As this has been ongoing for at least 48 hours and the use is moderately frequent, I want a second, well first opinion from a trained doctor rather than the cobbled wisdom of previous admissions and common sense from my head. Plus, it has been drummed into me to seek regular medical advice should we be in the position of using it regularly especially if combined with other factors like a temperature (check!) and potential for dehydration (check!).

The GP now looked at me as if I was mad.

Wriggles was doing her infuriating trick of looking the picture of health if as white as a sheet, whilst twenty minutes earlier she was teeming with mucus and screaming in pain. At the time of making the appointment hours earlier she was refusing all drinks and had not urinated for some long hours. Now, she just wanted to creatively rearrange the paperwork on his desk.

He admitted she was well on the way to being dehydrated as she was a borderline case now but was very chipper about the whole thing, as he did a test to determine how hydrated she was or wasn't. He was boggled that she is not on solids: "And does she, you know, actually grow?"

And then, after describing the coughing and chesty episodes that had plagued the last days he seemed perplexed about administering Ventolin to open up her airways, which are narrow and easily clogged. I had explained that not giving her anything leads to breathing difficulties. He didn't seem to understand still.

GP: And what if you didn't give her ventolin?

Me: [trying to work out if he is asking a strick question] I haven't actually tried that at home yet. But from experience, generally an emergency admission to resus following respiratory distress needing oxygen, nebulisers and sometimes IV fluids and continual monitering as her heartrate becomes erratic. When it has been held off in a controlled environment like hospital, her breathing becomes worse and worse and she becomes tired, disorientated and takes even less fluids if possible and will still need either a bronchodilator inhaler, nebuliser or oxygen in the short term after delaying it. There is a reason why we have been prescribed it and told to use it when a virus or respiratory infection is present!

I know they have to be careful that untrained parents are not self medicating. I know they have to ask routine questions.

He nods and leans forward in a conspiratorial manner. "Is she your first child?" he asks in an almost pitying voice.

I could have lobbed the Duplo brick Wriggles had at his head.

I am acting on advice given to me by the hospital who look after her care in the main and have witnessed her in various states of health over the year! I do not sit in surgeries for fun or as a hobby! If i thought I could be managing this ticketty-boo, we would be sat in front of CBeebies at home! Believe me, I would swop you for a mug of coffee and a chocolate finger right now if I could.

Thankfully, she has perked up a little and the coughing is subsiding this evening. She has even had a wee (I am sorry Wriggles) and a tiny drink. I however, am still in a huff!

Growing Up: Wriggles in Review on Home Oxygen

 At first, going home on oxygen seemed very daunting. It was easier than I imagined once I got used to it and more of an inconvenience than something of terrors. Wriggles was on just 0.1 litre-she just couldn't kick the habit and needed that little bit of help to ensure she did not plummet quickly or run into any trouble. We used the canisters rather than the concentrators, and had two large canisters about half my height for the flat, and a portable one for going out and about which neatly fitted into a rucksack for my back. Well; a specially designed rucksack rather than your average one. It did make me look like an astronaut and elicited some intrigued attention when leaving the house. I was once followed around Sainsburys by a man-it turned out his mother was going to be on home oxygen therapy too soon and he was curious to ask questions and was having trouble plucking up the courage!

There were good and bad points to be on home oxygen. Obviously the main one was that it was vital for Wriggles' survival and enabled her to grow and develope as she should. It also meant we could be at home rather than languishing by a cot on a paediatric ward. Other good points were that it meant we hit criteria to recieve some help, as it was an additional need and something that required specialist training.

Not only did potential babysitters need to be proficient in knowing the workings of a canister, the level of dosage, check the said infant was saturating well, what to do if it all went wrong and being able to administer first aid (CPR) they also had to be able to tape cannulas on to small babies who do not want cannulas or anything else taped on. Understandable really. The skills were easy to pick up; the main barrier was that it frightened the living daylights out of many people as it made Wriggles look far more vulnerable than she was. I was in no way ready to leave her for a night down the pub, but even if I wanted to, I would have been hard pushed to find someone willing. I was however helped out with FST, the Family Support Team from the Great North Children's Hospital and also a lovely lady from the Rainbow Trust who would run us to hospital appointments and help get groceries. Although we could have got by without these ladies, they really made a difference especially as I was a single parent, so had no other half to share the duties, the worries or the practicalities with. Or god forbid, the rushes to hospital.

Wriggles was in recipt of DLA (Disability Living Allowance) and we were able to apply for a Blue Badge for our non-existant car.  The former was incredibly helpful especially in getting to appointments, the latter was a nice thought.

The bad points were that annoying (have you tried to bathe a squirmy 'newborn' attached to a metre of plastic tubing? I would only advise it if you really have time on your hands and a penchant for frustration and are a sadist who enjoys torturing themself with the fear of getting bubbles in the cannula).  You need super-organisation for going up and down stairs to swop over from big to travel cylinders. You need a steely soul to prise off the sticky tape that holds the cannula in place on a regular basis to change it over and often have to treat sores on the face, unless you are lucky enough to find a sympathetic professional to prescribe duoderm tape. The other downpoint is the bloody tubing. You grow to be barely aware of it; until you trip over it with a full plate of beans on toast and stub your toe on a bookcase.

It is less of problem when they are very young; it was when Wriggles began to be more aware of the world around her it became more of a pest especially for her. Although we went home at 37 week, effectively 'term', making her a 'newborn' she had slightly less floppiness than a newborn having been undergoing physiotherapy on the neonatal unit for the past month and having built up a little strength. Tummy-time with tubing is no fun. She was a star though and powered through it.

In reality, the worst thing about home oxygen is the increased risk of RSV; Respiratory Syncytial Virus. This is a common virus that most people will get at some time, that is essentially cold-like. However, in the very young (6 weeks and under), premature, immunodeficient, those on oxygen therapy and those with chronic lung disease such as asthma and broncho pulmonary dysplasia, it can be very severe and can lead to stays in intensive care on ventilation and can sadly in some cases, be a primary cause of death.So we were advised to essentially take up hermiting for the winter months. Needless to say, you don't meet many people during hermitting. In fact, you see very few (not including the postman). Although the reasons were impeccable and Wriggles' health was paramount, I feel I missed out on vital mummy connections to make and having missed any antenatal friendships, it ended up being months before we so much as came across another mum and baby, which would have really helped in those early days, just to know I wasn't alone and that everyone finds it tough, oxygen or no.

But, we got through it. Now it seems a long time ago. In reality, it was just a year. And how things have changed. Wriggles still does tire easily and due the fact her lungs are not tip top and much of her energy goes into existing not growing, she is still quite small and i don't expect things to change anytime soon. But it gave her the best possible start and also enabled us to escape the confines of hospital, for which I am ever grateful.

What a difference a year makes

Good Riddance

Hurrah, January is nearly out the way!

I am not wishing life away, but I have no fondness whatsoever for January.

It is long.

It is cold.

It has normally sold out of Christmas selection boxes.

It is normally the season for the binmen to go on holiday meaning the rubbish is overflowing.

It needs at least two pairs of socks, most of which are missing, presumed eaten by the Hoover.

It is stripped of cheering sparkly tinsel, lest it bring you Bad Luck.

It is time to embrace the thermal vest, which could frankly could be anywhere in the flat.

It is very hard to persuade a strong-minded 1 year old to go out of the nice warm living room to the cold outside so that mummy can please buy some milk to have a cup of coffee.

It is full of sneezy noses.

It makes me wish I had shares in Kleenex.

Although actually, so far, Wriggles nor me have had a truly disgusting sniffle. Mild yes. Enough to hide under the blankets and watch CBeebies and read books all day, but nothing too vile (and I would like to keep it that way, please).

January is also slap bang in the middle of RSV season. Respiratory Syncytial Virus, or bronchiolitus as we are more familiar with, is bad news to most parents but strikes a gloom into the hearts of parents of premature, vulnerable and immunodeficient children. The risks are much more potent and the potential for complications is more acute. Every snuffle sets me on High Alert, and I know I am not alone. Because of this, Wriggles receives 'shots' to protect against this, in addition to the flu jab and winter-long antibiotics to see off any nasties. Today we had the last immunisation for the winter, which should be effective until the beginning of March where the blasted virus tails off it's dastardly work. Not only am I relieved to have gotten this over, I am also glad that it is one less trip to Outpatients to contend with, and one less activity involving the pour soul being stabbed with a needle. Hooray!

Long live February (nauseating Valentines Day notwithstanding)!