Water Play

This week I have found really hard, what with colds, an unwanted trip to hospital, mention again of fundoplication surgery which I am really not keen on, an increase in physio as Wriggles' muscle tone is playing up and her legs are getting more exaggerated which is not a good thing for inducing mobility and lashings of torrential rain. This afternoon, our friends came round which was a very welcome bit of socialisation with no medical strings attached and really helped to clear the metaphorical clouds looming above my head! Trying to keep on the good track this afternoon, I decided it was high time we tried out Wriggles' birthday present: a water table.

I found choosing presents quite hard for her second birthday; things that would fit in my small flat, things she would enjoy, things that would push her, things that wouldn't drive me off a cliff...things I could afford! She loves messy play and is a complete water baby, and in the absence of swimming while her stoma site heals, playing at the sink is the next best thing. Or better, a table on the floor with less scope to slip over. Also it challenged her legs as it was a perfect incentive to stay standing and bearing (some) weight.

We chucked in all the bath toys, some stacking cups with holes in, a stray ball from a ball pit, a nice pouring cup and filled up the sides. I tried to have one side with strongly scented bubbles and the other plain water with a bit of glitter ("DAAAAARRRRS!") which of course got mixed up in about five seconds flat.

 And then let her loose!

It was really therapeutic playing with the water, but mostly seeing how much fun she was having. My floor got an impromptu thorough wash, which to be honest is probably no bad thing. We poured, splashed, shouted, sang and had a whale of a time. Just what the doctor ordered.

Muuuum, I am NOT doing your washing up for you!

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?

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.

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)!