The parent's guide to surviving hospital

Picture: etsy.com

When your child is in hospital your first concern is always for them, but it's still really important to look after yourself. After all if you're sleep-deprived, half mad and haven't eaten in three days how are you supposed to look after your little one? Babies pick up on tension so easily, and if hospital makes you stir crazy you pass it right onto them. The three week stay we had last November was a lesson to me, and our recent stay clarified things even more. So I thought it would be a good idea to pass on some of the things I've learned, just in case they're useful…

1: When you're taking your child into hospital – even if it's just to check something out – always assume you're staying for the night. I have a semi-packed washbag at home that I can just throw into a holdall at a moment's notice along with a change of top and undies. The bag contains an itty bitty deodorant and shower gel, some cleansing face wipes and dry shampoo (ward showers can be a bit rubbish so if you have long hair, dry shampoo is your friend.)

2: If your stay is longer, choice of Pjs suddenly becomes vitally important. I always sleep in a big baggy T-shirt and leggings. Consultants have a habit of popping to your bedside at 8am when you're still rubbing sleep out of your eyes and reliving the scared-little-boy trauma of the night before. I find it's less awkward to have a conversation with them when you're wearing something that passes as day clothes, rather than bunny pyjamas.

3: That said, don't forget the slippers. Wearing the same shoes 24-7 does weird things to your feet, and nurses frown upon barefoot night wanderings.

4: A torch is quite handy for night-reading. Ward lights out at 9pm, people.

5: Buy fruit and lots of it. Hospital canteens and shops sell gazillions of chocolate bars, a wealth of crisps and a dismal selection of yellowed apples. The last thing you need at a time like this is scurvy.

6: If someone offers to visit you, let them. Don't say 'only if it's not too much trouble' or 'really, we'll probably be busy' After a couple of days of just you, your your partner, a poorly dude and the medical staff, you'll need to hear about the outside world. Try not to cling to their legs sobbing when they have to leave.

7: Hand cream! You will be washing your hands approximately 30 times a day – even more if your sproglet is infectious. Not to mention the alcohol rubs at every ward entrance and in every loo. It's vital to stop the spread of germs, but that doesn't mean you have to get old-lady hands.
Some of you might think this sort of thing is shallow, and of course dry hands aren't the end of the world. But keeping clean and comfortable and not distracted by niggly little things makes you a better hospital-parent and that's important because…

8: Your child's treatment is down to you. You're terrified, disorientated and adrenalin is pumping through your body but despite all this, you have to be ready to reel off your child's medical story in 10 seconds flat.
At one point my little guy was being seen by the paediatric surgeon, the paediatrician (totally different discipline apparently) the gastro team, the dietician, the pain relief team, the pharmacist and the physio team. Each arrived at his bedside wanting a potted history but tailored to their specialism (developmental stuff for the physio, digestive stuff for the gastro team, etc.)* They were all carrying his file, but it's about four inches thick and there's no way they'd been able to absorb all the info they needed.
So it's up to you to keep it concise, factual and make sure they answer all your questions too. You're under more stress than you have ever been in your life but you have to be at the top of your game. No pressure there, then.

9: As for the question of staying occupied, I'm still stumped. Ward life involves long periods of waiting around, often next to a sleeping toddler, and it's hard to find something you can focus on when such a big part of your brain is screaming “EMERGENCY! SOMETHING IS WRONG WITH MY CHILD!” Bring books of the trashiest sort, with no death (unless it's one of those fun murder mysteries where someone frightfully ghastly is poisoned and everyone still dresses for dinner.)
Download things onto iPlayer to watch offline – although you'll probably never make it through a full episode. Make sure you have some non-taxing trivial games on your phone.

10: Keep busy. This is a very hypocritical piece of advice, because I don't follow it. I end up semi-paralysed by worry and unable to achieve anything. I read a few paragraphs. I write half a blog entry, knit a few rows then unpick them because I haven't counted stitches properly.
Because when you're in hospital all normal life is on hold. I suppose the best piece of advice is to realise that, and not to put pressure on yourself to keep all those balls in the air. Just focus on your sickly little one, survive it and remind yourself that this isn't real life. That starts again when your little one is better, and when you can go home.



*A footnote. I just want to say thank you to the amazing team of people that kept my little guy alive and got him well again. I might moan a bit about hospitals in this post, but when it comes down to a choice between decent showers for parents vs huge medical teams dedicated to the welfare of my child, I know which one I'll pick.

Fundo diary part 5: Home

I've discovered something: the threshold of our house is magic. As we crossed over it, LG's face lit up, his shoulders relaxed. The same thing happened to the rest of us (with less squealing) The relief of coming home from hospital – no more obs, no more grubby kitchen mugs or plastic-encased pillowcases. Just a whole private house to ourselves with nobody sticking their head around the door brandishing syringes and rubber gloves.

LG's appetite began to perk up instantly. And although for the first day he was still a little clingy and under the weather, within 24 hours he was bimbling about as usual. Picking things up, chucking things around, charging about like a nutter with his brick trolley and learning new words. (“Flower!” “Banana!”)

Meanwhile I started sorting things. I cleaned the bathroom, I did mountains of laundry but then I decided that wasn't enough and started clearing out my drawers and deep-cleaning the bedroom. I steam-cleaned the basement, vacuumed everything that didn't move. And I realised I'd been putting all this stuff off until “after the operation”. As if everything else in life was on hold until we had got through this.

The best job of all was throwing out the dozens and dozens of oral syringes that had taken over the kitchen. Every night I'd spend ages washing out the seven syringes a day that we used to deliver LG's anti-reflux drugs. Now, if everything goes OK, we won't need them any more.

OK, I told a small fib there. I didn't throw them out – I'm too superstitious for that. Instead they're in a shoebox in our cellar, along with all the leftover drugs that aren't near their use-by date. I hope one day to throw that box away without even opening it. I never want to see them again.

Fundo diary part 4: Hospital blues

Days pass in the isolation room. The things that keep me sane are my man, my Mum and the fact that I can escape for a shower and a quick breakfast to Ronald McDonald House over the road – a luxury we never had last year because it was still under construction.

But these things don't matter to LG. He can't lie in his cot thinking well this sucks, but at least it'll help in the long term. All he knows is that he was feeling fine until we dragged him into hospital, stuck a mask on him and he woke up with a funny knot in his stomach that won't go away.

Every time a nurse or doctor enters the room he goes crazy. Every time we have to change a nappy (which we do, a lot) he sobs inconsolably. He has flashes of his old self – obsessing over cars and seeking out packets of biscuits with a hawk eye – but then he goes tired and listless. And who can blame him, trapped in the isolation room?

Then at the weekend we get the results of his poo test – negative. No bugs lurking in his digestive system. And although the runs continue, his eating picks up (which means even more steaming, noxious nappies, but we don't mind that.) He keeps it down, too.

It isn't until later on that I'm reading the fundoplication leaflet I picked up on the ward and find this note under the heading of possible side effects:

And it didn't occur to anyone to mention this??

Sheesh.

Anyway, after the clear test it's decided that we can go. He's not ill – it's hospital that's making him like this. We've been in exactly one week - the doctors did say it would be a stay of 5-7* days and they were right. We pack as fast as we possibly can.

As we leave the hospital behind, the tension lifts, and LG even has a little babble. Home is where the healing is.

*Please note, I wrote all these fundo diary entries offline in the hospital and it's taken me a few weeks to get them all uploaded - so ignore the dates on the blog as it makes it look like we were in hospital for three weeks!

Fundo Diary part 3: Nappygeddon

One and a half days after the operation...

At 2am this morning I was woken up by what sounded like a water pistol being fired in the little guy's cot. I could hear a liquid substance being sprayed at high speed against some kind of surface and for a moment I wondered what it was.

Then I smelt it.

Then the farty noises started.

Oh.

I spent the rest of the day changing nappies full of watery green slime, requesting clean sheets and getting increasingly worried. “He's probably picked up a bug,” the doctors said, sending a nappy off to be tested by some poor unfortunate lab rat. The nurses moved us into an isolation room, just in case.

When he started vomiting I panicked even more. Should that even be possible now? He was heaving for minutes at a time, his stomach contorting violently and all he brought up was a mouthful of milk and… a small spot of blood.

Worried.

Fundo diary Part 2: Feeling the fear and doing it anyway

They day before we were due to be admitted to hospital I was exhausted. I felt like the air around me had turned to jelly – I could barely see straight and it was an enormous effort just putting one foot in front of the other.

“I think I'm getting your cold,” I told the Man.

Man sniffled and did a little man-flu groan. And I realised that we were both overcome with nerves. With him it had come out as a sore throat and sniffly cold, with me it was like being hit over the head. It's happened to me before – once on the first day of a new and especially scary job, I nearly fell asleep at my desk.

My friend, who's a counsellor in training says my body is releasing cortisol, the “stress hormone” which seems to be doping me up to the eyeballs. I decided to go clothes shopping – it seemed like a nice, shallow activity to pass the time, but I came over all dizzy in the Zara changing rooms and thought I was going to faint.

Of course LG is blissfully unaware of this, and is charging around the house full of energy. You can see him learning, growing and developing almost by the second. New words are exploding into his brain. “Shoes! Car! Bus! Apple!” He's reaching, grabbing, soaking up everything he can.

A few days before I'd taken him to the beach, removed his shoes and watched him get to know the ebb and flow of the sea. Then I grabbed him and threw him up in the air. His giggling little face was framed by perfect blue sky and my brain took a little happy snapshot. Then the voice of doom piped up inside and said: what if everything changes after Monday? I shrugged it off, and shoved the thought to the back of my brain, but that sort of thing sticks around. Which is why you end up having funny turns in mid-price fashion shops. Switching off is easier said than done.

Operation day: 12pm
LG has been down in surgery for three hours now. I'm sure they have decided to go open rather than keyhole and I can't help thinking: why on earth are we doing this? He's happy, he's growing well, he's discovering new things about the world. We were told this morning that the cells in his oesophagus which might have been pre-cancerous actually aren't. Our boy is having his stomach sliced open and we don't even know if it's going to do any good.

Meanwhile we wait upstairs on the ward. The baby in the bed opposite has a machine which emits a squeaky beep, and it has been doing so for over an hour. There is no natural light, foul nappy smells are emitting from the cubicle next door and there are only stiff, plasticky chairs to sit on. Somewhere a poor kid is groaning, and an adult is explaining over and over, with mounting stress, that "you can't eat yet because you have a sore tummy." All this wears down a parent's nerves. We're crammed together like wobbling water balloons full of fear and after a while one of us will burst.

In the future I will write about the good things - the wonderful staff, the surgeons' skill, the kindness of the other parents and the wondrous fact that this is all paid for by the NHS. But that's not how I feel now. Now I just want my little dude back so we can start facing up to the new normal and find out whether we're doing the right thing or not...

Operation day: 9pm
The wait became unbearable about half an hour after I finished that last entry. The groans-and-beeping rubbed my nerves paper-thin. Then I read some random Facebook appeal about a missing boy and the sight of his little smiling face on the posters turned me into a blubbering mess. I fled to the canteen.

I imagined all sorts of things the surgeons might be doing – fighting to revive him, repairing some disaster, or discovering a new dark mass in his abdominal cavity. Eventually the phone rang – my wonderful man who had stayed by the bedside had spoken with the surgeons. Everything was fine – they had done the surgery laparoscopically and he was in recovery. It had just taken a little longer because of scar tissue from his original surgery 19 months ago.

And there he was, in recovery and too weak to even cry. His temperature was high, his eyes puffy and his little hands shaking a little from the morphine. Every few breaths he gave out a weak little sob. But the incisions were tiny – one less thing to worry about.

Now all we have to worry about is how this will change his eating. And that's why I'm still not sure if we've done the right thing. We've taken a toddler with improving reflux and a healthy appetite and deliberately set his eating back several months. We don't even know if it will improve his oesphageal motility. Did we have any right to mess with his recovery?

The decision is made, the stitches are set.

Now it's nearly 10pm, and he is sleeping. Hoping tomorrow is the start of something new and exciting. Whatever it is, we'll deal with it.

The Vom Diaries

"We need to keep track of his eating and vomiting" says the Man. "Something simple. Something with... stickers!"

I thought it was a terrible idea. How could something as complex as a food diary be kept just with stickers? But we've tried doing it in a notebook before and it's impossible to keep on top of. Besides, the Man was pretty convinced and he bought a cheapie calendar online and some teacher's stickers.

And you know what - I have to say that he was right. Tracking LG's food was well-nigh impossible, but the vom diary really helped. The colour code was simple - yellow for a good day, green for vomit, red for vomit with blood. I changed the smiley faces to frowning ones for the vom-stickers, as it seemed more appropriate, and when I ran out of yellow smileys I switched to stars. Overnight was recorded on the left hand side, daytime on the right.

It meant that when we went to hospital I could take this along and give a clear, simple breakdown of when the blood had occurred and where. I didn't have to rely on my cloudy overwrought memory and the consultants could see if there was some kind of pattern forming. I'm fast learning that the clearer, more concise information you can give to the doctors, the better and speedier the treatment.

So this might seem like a bit of a geeky saddo post but it's actually a really useful tip if you're in the same situation as us. Start your own vom diary today!

Fundo diary part 1: So what is a fundoplication and why am I so worried about it?

The picture makes it look like a little scarf has been wound around the top of a stomach, and I guess that's as good a way as any to explain it. The NHS leaflet we picked up on the ward sums it up a little more technically:

The operation involves using the top part of the stomach, known as the fundus. This is wrapped around the bottom part of the oesophagus to tighten the junction between the oesophagus and the stomach. As your child eats and drinks the pressure in this part of the stomach increases. This causes the junction between the stomach and and the oesophagus to close off, preventing your child from being sick.

Consultants consider this a pretty simple procedure which is usually done keyhole – although there is a chance that the position of LG's stomach will force them to make an open incision.

And why am I worried? Apart from the whole primeval terror of a mother signing a permission slip for someone to cut a hole in her son's body? OK, it's mainly that but also the knowledge that any surgery involves a risk and it's not always guaranteed to work. Could we be making things worse?

And when we asked one of our doctors how a fundoplication works he said: “Well, nobody's really sure...”

I was grateful for his honesty but forgive me if I don't find that completely reassuring!

So far my little guy's reflux has been unpredictable and completely off the scale. Why should I believe an operation like this could solve everything?

Good week, bad week

You have weeks that go really well. Weeks where the little guy will reach out, grab the sandwich right out of your hand and shove it in his mouth. Weeks where he opens his mouth wide for every spoonful and shoves handfuls of hummus in his mouth while making ummm noises with relish. And then you think - yes, we've cracked it. It's sorted. Who needs a fundoplication when he's doing so well?

Then something happens. I have no idea what - a switch flicks somewhere deep in his digestive system and suddenly his body can't handle it. The simplest things come up - spaghetti hoops or even yoghurt. He cries and coughs at night, until I go in and hold him upright, waiting for the food to give in to gravity and to the little guy's frantic swallowing.


Those are the weeks that the floor ends up looking like this after even the smallest snack. Here we have toasted soldiers, bits of egg, noodles, breadstick and, I think, bits of fish finger. The upturned takeaway container is the barf bucket we keep handy at all times. Thankfully empty at this point.

On bad weeks, you don't know whether to pressure him to eat to keep him alive and growing, or leave the decision up to him, then worry that he's getting weaker like he did last Autumn.

The last few months have been a mixture of good and bad. Brilliant triumphs, smiley faces then a week of spoon-phobia or, what's worse, hungry eating followed by painful retching and vomiting. I hope this operation works.

All aboard the milk ladder

At the end of our last appointment the dietician promised to send me details of the 'milk ladder', a procedure designed to gradually reintroduce children to dairy products, monitoring their progress as you go. But unfortunately she hasn't. It could be, given my verbal diarrhoea at our last meeting that she's simply too terrified to have any contact with me, in case I start blathering on about Amazon again. Or it could be that she's overworked and underfunded and simply forgot.

She did say that the first rung is to start him off on biscuits like Malted Milk which are highly cooked but still contain milk (Group 1 foods) We had kind of started that already, so the next step, she said, was cake and things like Scotch pancakes.

Whoops, we'd already started that too - the day before I'd taken him for a walk on the beach. He grew unexpectedly hungry and I didn't have enough corn snacks so we shared a Lemon Drizzle. So we were on Rung 2.

I also pointed out that although cake is fine, Scotch pancakes will simply end up being dribbled out or chucked on the floor. The dude does not do textures that firm. The dietician looked a bit beaten by now. She sighed and said "OK, just give him a non dairy yogurt with a spoonful of normal yogurt in, and gradually increase the amount. That should cater for his special requirements."

(Blimey, looking back on this I am still cringing! I was such an annoying mum. She must have been desperate to get rid of me by then.)

So that means our toes are now firmly on Rung Three. Weeks later, I finally found a copy of the milk ladder online (here it is if you need it yourself) and although the pdf I found applies more to children with allergies than intolerance it seems clear on one thing. You're supposed to do this slowly. You're supposed to stay on Rung One for three months!

However we reached rung three with no clear difference in terms of vomiting. He's still sicky at night as he's lying in his cot, and has days when he's sick during meals. But it doesn't seem to bear any relation to the milk he's consumed.

Still, I told myself. Best ease off for a bit, just in case. However, the other day I came back from the shops to find my other half giving LG his lunch.

"I've grated him some cheese," he told me proudly. "He loves it." LG beamed up at me, shreds of extra mature cheddar dangling from his mouth.

So forget the milk ladder, we're on the milk escalator now...

Food file

Just a quick note for my own reference, of the things he will and won't eat. Bit boring for everyone else, but actually quite useful for me and the little fella.

Basically when we feed him, things either go OTS (Over The Side) or ITG (In The Gob). Any meal could end up going OTS, and the likelihood is that the longer I have spent preparing it, the more likely it is to have a date with gravity. So, even though I said I'd never do fish fingers and spaghetti hoops, that's what I end up doing.

As with any toddler, the things he'll eat change from day to day, but sometimes I forget things for a while and get into a bit of a rut of serving the same thing over and over. So I thought this list would help me keep track and maybe give other people ideas if anyone actually ever reads this!

Things he will eat most of the time
Crispbreads with fakey cheese
Crispbreads with hummus
Big fistfuls of hummus
Fish fingers (sometimes)
Spaghetti hoops
Heinz spaghetti bolognese in a tin
Soya yogurts (preferably from Tesco, not the Alpro ones)
Mango Chia Pots - the most expensive thing on the face of the earth (honestly you'd think it was made of spun gold) but full of yummy calories.
Alpro Vanilla dream dessert
Organix Carrot Sticks corn snacks
Cheesy wotsits (his dad gives them to him, I deny all knowledge)
Supernoodles or similar
Very overcooked spaghetti
Cous cous
Boiled egg yolk
Beef stew but ONLY if it's been made by my stepmum. He won't touch the filthy stuff I make.
Prawn crackers
Chinese rice crackers

Things he will eat at a pinch
Slices of beef or chicken (only if I eat it myself in an elaborate "nom nom nom" kind of way)
Liquidised bolognese sauce with cous cous
Clementine segments (chewed then spat)
Jaffa cakes (with the jaffa bit taken out)
Alpro soya custard
Sometimes rhubarb and apple puree with Alpro Soya Single cream
Ella's Kitchen Stage 1 meaty dishes
Digestives, hobnobs or ginger nuts (sometimes he regurgitates these almost immediately)
On rare occasions, slices of bread or toast with soya butter
Very, very occasionally grape halves (chewed and spat, like clementines)
Beef or chicken slices liquidised in a bit of gravy with some peas

Things he used to eat but won't any more
Normal rice cakes (he will still eat these if they are stolen from another baby)
Pears
Peaches
Banana
Porridge
Breadsticks
Vegetable purees
Apple puree (even with cinnamon and sugar)
Pear puree
Basically any fruit puree without cream.
Strawberry
Ice lollies

Things he wouldn't touch if he was dying of starvation
Raw apple
Cucumber
Carrot sticks, boiled or otherwise
Raisins (although he does like throwing them on the floor)
Blueberries. Nasty things.

In which I just can't shut up

I think I talked too much in the dietician's office. It was like some strange uncontrollable tide of prattle. I was pouring out everything - all the tedious stuff I usually save for you, dear reader.
Those details about whether foods go over the side or in the gob (OTS or ITG), the fact that one day he wants me to feed him, the next he'll insist on feeding himself (badly). His love-hate relationship with spoons.

I then veered off into how difficult it is to source oral syringes once the hospital ones give out on you. "I buy them off Amazon," I burbled inanely. "You can buy anything on Amazon except drugs and sex toys."

Poor woman. She must have thought I was mad.

Actually I think that, after the airy offhandedness of the surgeons her warm, reassuring demeanour just brought out the urge to over-share.

Towards the beginning of the appointment, before all this, she had asked me how I felt about LG's upcoming fundoplication.

"It has a high success rate," I parroted. "And the consultants say it will help his oesophageal motility. I know things can't go on the way they have been so this seems like a good option."

Then I paused and something came out that I hadn't shared before. "I want it to work, and I know on paper there's a high chance it will. But I can't shake the feeling there's something else going on too. I don't think this fundo will be the solution, I think it will just throw up more problems."

Once I said it, I realised that's what I'd been thinking all along. That we're about to put our son through an intense surgery that will change the way he eats, possibly for the rest of his life, and that it won't even begin to solve our problems.

I know we have to go ahead, that we can't keep pedalling along hoping his reflux will stop but what if I'm right?

I think that's what triggered the endless babbling. I was exploring, trying to figure out how I felt by going on and and on. I only hope I have a shred of credibility left with her!

But I did come away with one clear decision. We're back on the Milk Ladder. More of that next time...

Everybody loves bacon

 So I had a stroke of genius as I wandered down the cold meats aisle. Bacon! Lovely smoky pink bacon. I mean, who doesn't love it, aside from the obvious religious objections? Ask any vegetarian what meat is most likely to lure them back to a state of carnivorous greed and they'll cite the sizzly stuff.

Our ongoing mission, as laid out by the dietician, is to get as much protein and calories into him as possible and bacon provides both.

Over the last few weeks he's been going through a fussy stage again. He used to love fruity mush and gorge on pears off the pip. Now he looks at it as if it is Of The Devil. As for vegetables, I have a whole freezer full of uneaten, rejected purees.

So then inspiration struck again - what if I mixed the bacon with the purée?

Oh yes.

I minced some up with some defrosted sweet potato purée and tasted it - weirdly smoky rather than meaty but my consultant says tofs often like strong flavours so this could be a winner.

The first attempt didn't go too well - I didn't mince it fine enough and he spat out the bits but I could tell he liked the taste. The second time I made a larger amount and puréed it finely. He was definitely intrigued. He allowed the spoon near his mouth - even opening it sometimes.

Tonight, attempt three, I'm going to combine it with overcooked noodles - his favourite. Wish me luck...

This dude is made for walking

One great thing that's happened over the last few months is that LG has finally got into walking. It started slowly when he realised he could use his pushcart to get around. He grew more and more confident with that, then started shuttling a few steps at a time - sofa to Mummy, Mummy to sofa. Footstool to sofa, to Mummy.

Then suddenly, a few days ago, he was off. There he was, wheeling his cart around the front room while I tidied up. After a few minutes I realised the cart wasn't rattling around any more and I figured he'd fallen over. I looked round and he was gone - he'd headed into the hallway.

You can imagine my combined joy and panic.

For months we'd been worried about whether he'd do it. He still doesn't crawl and has no interest in it. He even had an appointment with the paediatrician a couple of weeks before to make sure there was nothing physically wrong.

But now, finally it's happened.

This means that, for the first time his appetite has finally started to grow because of his increased activity. I mean, don't get out the tickertape yet - we're talking a few extra bites and not quite so much spoon phobia. Nothing spectacular but enough to give me hope for the future.

It's had an interesting effect on his vomiting too. That random Exorcist style sickness where the whole contents of his stomach come up for no reason - that doesn't happen so much any more. Instead he's only really sick at mealtimes - when he bites off more than he can chew - and at night time when he's lying down.

When he was first born the doctor predicted this. He said that once LG became more mobile the reflux would subside. Unfortunately this improvement has come too late. He still coughs so violently at night that blood comes out. A scope this week revealed that he has chronic inflammation in the lower part of his oesophagus. Despite months of denial and hoping that it wouldn't come to this, we're heading for a fundoplication.

When hospital ate our November

I've been putting off writing this post for months - so much so that I've got a dozen other ideas for posts backed up in my head, but I can't write them until I've written this one. The thing is, I don't want to think about it. I don't want to relive it and tell you how I felt, because I never want to feel like that again.

So here is a bald, stark list of facts to sum up the story.

• At the last operation the anaesthetist noticed that the little guy was looking a bit pale. She ordered a blood test and, as I mentioned, it took about half an hour to squeeze a few drops out of him. 
• Unsurprisingly it turned out they hadn't taken enough blood so, instead of going to his little friend's first birthday party, we went to the hospital to get another blood test.
• That night we got a call at 7pm from a concerned doctor saying his haemoglobin levels were frighteningly low.
• The next day (halloween) we went in and to my shock they decided to give him a blood transfusion.
• I sat next to him through the night watching the shiny bag of blood draining into him trying to distract myself by thinking of vampire-baby jokes.
• They told us we'd be amazed by a sudden surge in energy in him. Instead the next day he became tired and floppy and started running a temperature.
• By the middle of the next day he coudln't keep any of his food down. We were syringing Dioralyte into him and hoping for the best.
• That evening we finally called the hospital. They said bring him in - they put him on a drip to keep him hydrated and nil by mouth to rest his stomach.
• He was due to have a dilatation in 24 hours so now the surgical team at his main hospital got involved. They wanted him transferred so they could assess him too.
• So that's how we found ourselves in an ambulance travelling the 30 mile trip. The paramedics kept holding an oxygen mask to his face - this was the first time I started to suspect that something was really wrong.
• The surgical team took one look at him and declared him unfit for the operation (winning the medical version of the No Shit Sherlock awards)
• Team after team of doctors came to visit him - the gastro team, the surgical team, the paediatrics team, dieticians and physiotherapists. Every hour or so I had to retell his story to a new and different specialism. I still didn't really know what was going on - just that he couldn't clear his lungs.
• Every few hours nurses would come in and suction him. Physiotherapists would pat his body to try and loosen the flem on his chest. All the while his Sats (oxygen levels) were hovering around 80 when they should be 100.
• A week before he had been running around in his walker - now he was more or less tied to a cot, hooked up to the Sats monitor, the oxygen pipe and with a nasogastric tube for his food.
• Meanwhile I lived on the fold-up bed next to him, trapped miles from home by myself for most of the time going slowly stir-crazy.
• I was having my first night off - about  a week after he was taken in - when the chest x-ray results came back and showed "a shadow" as I was told on the phone.
• I spent all night terrified that he had pneumonia.
• And guilty - the reason he wasn't fighting the infection off was because he was so weak from the anaemia - which made me feel I hadn't been feeding him properly.
• In the morning the doctors explained the shadow was "gunk" and the physio was starting to succeed in shifting it.
• He was finally diagnosed with a virus called Parainfluenza 3.
• There was no sign of an infection but he was given antibiotics just in case, which gave him spectacular diarrhoea on top of everything else. We went through about four babygros a day.
• We bumped along the bottom for a while with his condition neither improving nor getting worse.
• Then, slowly, he started to improve.
• He started to eat.
• His lungs cleared.
• He started smiling again.
• Finally his sats levels started to climb.
• And then one glorious day - three and a half weeks after we came in, we were allowed home.

You can imagine his little face when we walked in the door at home - he was laughing, smiling and jumping around in my arms. He had probably almost forgotten where we lived - I know I had.

But it's taken a month out of our lives, and that's hard to recover from. The little dude flourished for a few weeks after that - making up for lost time - but we didn't see any more new milestones for a while. And when we go back to hospital he cries at the sight of a stethoscope.

As for me, I'm still recovering - still making up the lost time at work, still trying to relax and keep calm every time he throws up a feed or has blood in his vomit. The stay in hospital changed everything.

But on the plus side, I learned so much about his condition, I accessed so much support from the medical teams and even met another Tof mum whose little boy was in hospital at the same time. So things aren't so bad. Whatever doesn't kill you makes you stronger, and all that jazz.