World Diabetes Day

So tomorrow is World Diabetes Day. I didn't know this until a few days ago. 24 days ago I barely knew anything about Type 1 Diabetes.

I knew a few people with type 1, I knew you needed injections and blood sugar tests, I knew you had to weigh some of your food - but that was about it. I thought the worst part of it was having to inject yourself several times a day but thought once you'd got past that it was probably an easy condition to have.

Now here I am, 24 days on, and boy was I wrong!

It seems our lovely boy, with his rare neurological conditions, just didn't consider himself unique enough! He took his complex rare diagnosis and he doubled it! Now, all of a sudden, he has two (relatively) rare complex medical conditions. Completely unrelated to each other. Really really bad luck.

It's still very early days and we have lots to learn and understand but we have learnt vast amounts in the last few weeks. Here's some things we've learnt about looking after a child with Type 1 so far...

William's insulin pump, attached to
him 24/7 via a small cannula.

• Many children discover they have Type 1 when they are admitted to hospital critically poorly with a condition called Diabetic Ketoacidosis. We were told William was maybe 48 hours from death on admission to hospital had we not sought help.
• Several times a day we administer insulin to William in varying amounts depending on different factors. Too much or too little insulin can be fatal if not managed correctly.
• Having a tube fed child makes managing type 1 easier!
• Having a non verbal child with minimal self awareness makes managing type 1 a lot harder! 
• There are some very clever people out there who have understood what diabetes is, invented some clever equipment to help manage it and work alongside patients to manage this condition.
• This is a condition that needs ongoing, daily management. You don't get given your dose of insulin and just get on with it. You have to manage it every day, all day.

William highlighting the warnings signs of Type 1. He wees in
a nappy, shows no indication of  thirst, has been putting on
weight excessively and only slept excessively for the 36 hours
before admission (which he can do for a number of reasons!),
but he never likes to do things by the book/poster!

24 days ago we had a boy with a complex medical condition and profound disabilities. Now we find ourselves in slightly uncharted territory. While Type 1 is much more common than Lissencephaly, it is very rare in children with pre-existing rare conditions! Our home carers and school TAs are doing amazingly at learning all this new stuff being thrown at them but our hospice care package is going to struggle. Now more than ever we need some overnight care out of the home for William and William needs consistent care from highly skilled people. Matching these two needs together is a bit tricky so our next step now is to work out what form of overnight care we can access which will provide William with what he needs.


We are still in something of a state of shock. Shocked that something else could happen to our boy, that we have somehow got to find the time and strength to manage something else, that this condition is so much more complex than I ever knew. Shocked that this isn't just a winter phase or a few weeks of extra work, but a part of him for the rest of his life.

That's enough now. No more complications, no more equipment, no more diagnoses, no more time consuming care routines. We've had our fill.

Friends

This is something I've thought about writing for a while.

Since having William, and particularly in recent years, we have become terrible people to be friends with! It's something I feel very conscious of, something I worry about and something I want to take the time to explain.

We have so many lovely friends, old and new, and most of them we hardly see. In fact, unless you happen to be at our church on a Sunday, are my mother-in-law or are employed by me, chances are we've not seen you for some time.

Things first got a bit tricky when William arrived. He was a delicate, unpredictable little chap, we were nervous to take him far from home for too long. He was in hospital a lot, he got ill a lot and we cancelled plans a lot.

Then William started throwing up A LOT. And we couldn't move him during or after a feed. We couldn't leave the house without several changes of clothes and piles of towels. So we avoided going places to help him keep his food in so he wouldn't lose weight and to avoid the stares.

Then we realised William was deafblind and taking him to a busy soft play/pub was not going to be his idea of fun. In fact it was going to often be really overwhelming and tiring for him.

Then William started to struggle with his breathing when sitting up for long periods and we started avoiding more long journeys.

Then we started to realise that our life had become so centered around William and his care and his needs that we didn't have a lot else to talk about. Our experiences of parenting were nothing like anyone else's and finding common ground became harder.

Then in an attempt to improve and prolong his life we started feeding him real food that we needed to make. We needed to measure out every calorie, 3 times a day we needed to feed him 307 calories, 31g of carbohydrates, 11g of fat and 7g of protein. And any free time we had got taken up blending food.

Then William got a bit bigger and a bit poorlier and his care routine took up more and more of the day. We got a lot more equipment which needed to go everywhere with us and it started looking like we were going for a mini break any time we simply left the house. Packing for a weekend away became a major stress filled operation and church weekends away, camping trips and even fun days out became insanely hard/impossible. And it made us tired and worn out. So we had no energy left to do anything and no time to do it anyway.

Then William got even bigger and it started to get impossible to take him to most people's houses. There's a doorstep or two, and a narrow hallway, with shoes lining the way through. There's furniture in the way and nowhere to safely lie him down. There's no where to change him easily and our backs are hurting and we just want to be at home where it's easier. We don't want to tell we can't come to your house because it might sound like we're saying your house is too small with too much furniture, but it's not. It's just not used to having a wheelchair user in it.

Then William's seizures got worse. They became more violent and he would make horrible painful noises. He would choke on his own saliva and need quick suctioning to clear his airway. He started startling at so many noises that we couldn't even empty the dishwasher/open the lift door/talk to him/brush his teeth/cough without sending him into a seizure. And we wanted to protect him from more seizures.

And in another year or two, it's impossible for us to lift William out of his chair and we can't go anywhere because there's no hoist. His chair is bigger and it actually wont fit through the doorway.

And it made us really sad. Sad that we can't be good friends to so many people we love. That we can't pop over for the day. That we can't come and stay for the weekend. That we can't join you for a fun day out at the theme park. That we haven't seen you for a year, or two. Or three.

So thank you to all our friends who have been patient with us, who have invited us to birthday parties, who have been understanding when we've had to say no, who've changed plans to visit us in hospital. Thank you to our old friends who've been there from the start and not given up on us. Thank you to our new friends, who've come aboard even though they know what they're signing up for!

Eliza: William's Medicines

Today I'd like to tell you about all the different medicines William has to take.

I LOVE calpol! I am always trying to trick mummy into thinking I have a toothache so I can have some calpol. So I think William's really lucky getting to take sooo many medicines! 

William has to take eight different medicines a day. Some he just takes once a day and some he takes two or three times. Some days he has to have some extra medicines if he's feeling poorly. On a normal day though he has 14 lots of medicine to take. 

Here I am helping William to have his nebuliser

Two of William's medicines are special ones that William needs to help his breathing. He uses a special machine called a nebuliser to have these medicines. The nebuliser turns liquid into a vapour that William can breathe in through a special mask. 

Three of the medicines William takes are to help him to have less seizures. When William was a baby his brain didn't grow the same as everyone else's. This means his brain doesn't always do the same sorts of things that my brain does. Sometimes William's brain makes him have seizures. This is where the brain get all muddled up and sends out too many messages at once to other parts of the body. William has lots of different types of seizures because lots of different parts of his brain get muddled up. Some seizures make William sad and some make him laugh, some of them look a bit scary but William is always brave and doesn't worry so I don't either. 

With William's tea time medicines

The other medicines William has are for all different things! One of them helps him to go the toilet, one helps him not to dribble so much and one helps his tummy. 

He also has some extra medicines that he takes only when he needs to take them. He has some to take when he has too many seizures and he has some to take when he can't get to sleep. He has so many medicines he has to have a special cupboard to keep them all in! 

I'm not really allowed to help with William's medicines because it's very important that he has just the right amount but here's a few photos of me helping mummy so you can see what it looks like. Apart from the medicines William has using his nebuliser, he has them all through his tube. We have to put them into special syringes ready to give him. Some of the medicines needs shaking and I like helping with this bit the best.

Next time I'm going to tell you all about some of the things William does that might seem a bit strange or different and try to tell you why he does them!  

Organisation!

Having a child like William and being me go really well hand in hand!

William doesn't make mess and I like being tidy.
William likes to sleep and so do I.
William doesn't need chasing around and I don't like running.
William likes having cuddles and I like giving him cuddles.
William needs a lot of organising and I love to be organised!

Over time William has added more and more and more and more equipment, medicines and disposables into the mix. This has required us to become more and more organised and inventive with our storage. We also regularly have other people in the house helping to care for William so we like to have everything easily locatable for them as well. Here's a little run down of how we stay organised caring for William.

William's Bedroom
Most of William's kit is stored in his room. We have single handedly given Ikea enough business to keep their Milton Keynes store open. I doubt there is a house in the country with more 'Stuva' furniture in it than our children's bedrooms combined.

From L-R, top - bottom: Oxygen; Medicine cupboard, syringe drawers, suction
catheters, medicine stock drawers, medical supplies drawer, feed drawer, under bed
storage boxes, nappy cupboard and more under bed storage boxes!

There is not an inch of William's room that isn't utilised for storage!

In one corner we store one of his oxygen concentrators and some of his oxygen cylinders, in another corner we store his suction catheters and in another we keep his standing frame.
Under his bed we have labelled boxes for suction equipment, oxygen equipment, nebuliser equipment, drawers for syringes and boxes of feeding supplies.
Under his therapy bench we keep his swim kit, suction bag and pump bag.
In one unit we store his nappies, wipes, disposable mats, towels for dribbling on, blankets and more feeding equipment.
In another unit we store all his medicine supplies. We have a shelf for the medicines he is currently on, a drawer for medical and gastrostomy supplies, a drawer for the rest of the months meds and a cupboard for even more meds, and all those bits and bobs you're not sure where else to put!

Wheelchair car park!

His bedroom also serves as the main storage area for his wheelchairs and standing frame. We often feel like we're playing one of those sliding puzzle games trying to move chairs around, in and out the lift.

Kitchen
Since starting William on a blended diet we've had to invest in a separate kitchen cupboard for him.
William 'eats' lots of healthy foods that we don't eat so we need space to store that and the hundreds of plastic tubs we need for freezing his food in.



William's trolley
After lots of illness last year and finding we were carting more and more equipment around the house, we decided to get William a trolley to follow him around the house with all his kit on. It keeps everything together and means everything is to hand when he's poorly and needing lots of attention.
We keep his suction machine, suction catheters, feeding pump, sats monitor, nebuliser, thermometer and pain relief on it.
It has proved to be one of our good organisation ideas! Eliza is very good at fetching the trolley for us and enjoys being able to help with something!

William's Paperwork
William is very proficient at accruing paperwork! He has his own filing cabinet with his older paperwork in. In the house he has three folders with his current paperwork in. One folder stores all his most current, relevant paperwork. This is the folder we take with us if we go away in case William fell ill. Another folder contains all his direct payment paperwork. The way William's respite works is we are given a funding package to hire our own carers. We are basically their employers so this produces a lot of paperwork. Finally his big folder contains all the other paperwork that we don't always need with us but might need to access.

As the equipment increased and the care routine became more full on, we found we were struggling to keep on top of William's routine. We'd only need to get behind with one 'drink' and the whole day was knocked off and we wouldn't finish his evening routine until 9pm. We therefore decided to write a daily plan for William's care on the days when he's not at school and we needed more structure.

So far we've found it to be fairly successful but there's usually something to throw us a bit off track! Of course at the weekends we have to tweak everything around if we're out and about but at least we have an idea of where we should be.

It's full-on caring for William and keeping on top of all his supplies, deliveries and equipment but it certainly helps keeping organised!

Beads of Courage

Recently William became the proud owner of his very own set of Beads of Courage.

Beads of Courage is a charity, started in America, which provides beads to children undergoing treatment for cancer. More recently they have included children with long term complex health needs in their programmes. Our community nursing team have become the first community team in this county providing beads to children like William.

The idea is simple, for every medical procedure or event you experience you earn a bead! Different types of procedures, tests or events equate to different coloured beads. Over time you build up a collection of beads that you can choose how to display in order to represent the journey you have been on.

As William only got his beads recently, we were allowed to back date his beads. This meant going back through all our old diaries, blog entries, facebook posts and hospital discharge letters and making a record of his journey so far. Once we received his beads we then threaded them in chronological order to represent his journey, so far, as it's happened.

The result is pretty amazing. I knew when I first heard about this programme that it was something I would love but I didn't realise how special the beads would be. The beads tell a story in a beautiful way. They allow us to show people that don't know much about William what he's been through and endured. They show how different each year of his life has been. They show the pattern of illness and hospital stays that are ingrained in our memories. They show how unfair it is that a little boy has had to face so much in his five years. They remind us of the journey Steve and I have been on and how we have changed as a result. Most of all they show what an amazing, brave, strong little boy William is.

For William so far his 639 beads show:

20 Immunisations

104 Clinic visits

42 Emergency admissions/ambulance rides

25 IV infusions

84 Nights in hospital

42 Days in isolation

2 Days facing a mobility challenge

3 Castings

48 Pokes (cannulas)

7 EEG/ECG/Ultrasounds

93 Days requiring oxygen support

4 Surgeries

16 X-Rays/MRIs

2 Transfers to PICU

11 NG tube placements

124 Visits from care team (nurses, physiotherapist, OT)

9 Milestone beads

Several special beads

Eliza: Playing with William!

Hello again! Today I'd like to tell you about some of the things William's likes to play with!

William doesn't like my dolls

William likes kicking his legs!

William doesn't like the same toys as I do. I like playing with dolls and my kitchen but William thinks those things are boring. William's favourite thing to do is kick his legs and wriggle. Some days he's too tired to wriggle but when he's feeling awake he loves to move!

William doesn't need very many toys because he likes to play with the same thing for a long time. He likes to spend a long time thinking about things and doesn't get bored as quickly as I do!

William has his own special basket of toys. Some of his toys are nice to feel, some make funny noises and some of them light up to help William see them. I like to pick toys for William to play with. William finds it hard to hold things in his hand so I help him by opening up his fingers and putting things in his hand.

William's toy basket

William loves beads like these
because they make a good noise
and they feel nice.

Here I am helping William to
play a shaker

         
William's most favourite toy is his chimes. They nearly always make him smile and he enjoys moving his fingers to make a noise. William likes these the most because he doesn't need to do too much to make a loud noise! William finds it hard to move his hands and arms so it is good for him when he doesn't need to do too much to make something work.

I like playing the chimes too!

 William can't play with me like most older brothers can but I don't mind because I like to find different ways to play with William. He's a great big brother because he's never mean to me and always lets me share his toys. Even when I'm a bit naughty and make William jump he still doesn't get cross with me.

Check back soon when I'll be writing about all the different medicines William has to take!

Post Surgery Update!

Tomorrow will be two weeks since William had his adenoids and tonsils removed! The surgery went well and the recovery went mostly well, apart from a blip with a tissued cannula!

Excited to be seeing the back
of his tonsils!

Recovering from his tissued cannula

After a not so good experience at our first attempt to go for surgery, we had a much better experience this time round. Everything went a lot smoother, the surgeon was expecting William and the anaesthetist was lovely. William was in very good spirits while waiting on the ward which helped us to know he was feeling good. William was taken to surgery at half 11 and by twenty past 12 we were called back to recovery where he was already recovering, needing just some wafting oxygen. The surgeon came to see us and said his tonsils were very large so we should see an improvement now they have been removed. William was moved to HDU shortly after and then to a normal ward later that day.

During the night William was still receiving fluids through his cannula and at some point (despite hourly checks) the cannula dislodged into his tissue (rather than into his vein) and fluid was pumped into his tissue causing his hand to swell quite dramatically. A plastic surgery Dr was called to check him over but thankfully they weren't too concerned and just advised to keep his arm elevated to encourage the fluid to drain. A small blip in the grand scheme of things and we were able to go home the following day.

A happy day!

He's been up and down in the last fortnight but considering what he's been through he has coped brilliantly. We've had several very quiet days which we suspect might be one of the ways William copes with and processes pain, but we've also had lots of happy days. Apart from a little episode last week, all the spot checks we've done on his oxygen saturations have been perfect which is quite unusual for William so we are hoping this is a positive outcome of the surgery but only time will tell. Knowing William and his variability we will need a good six months to assess how successful the surgery has been for him, but so far most indicators are positive.


Over the last year or so William has struggled a lot with excessive thick mucus in the back of his throat. We had seen some significant improvement in the last few months since he'd gone dairy free but since surgery he has seemed to struggle more again. The structure of the back of his mouth must feel quite different now and he seems to be struggling more to get his secretions forward enough in his mouth so we can suction them out. Hopefully this will improve over time as his throat settles down more and he gets used to it. His mucus production may also be linked to hayfever or other variables so he'll hopefully settle down by themselves.

Check back soon to hear about William's latest 'project'!

Surgery attempt number 2

Tomorrow is William's rescheduled tonsil and adenoid surgery! My hopes of it actually happening are slim so this time we've not thought at all about surgery and have just pretended we're off for a little trip to Addenbrookes and back! If the surgery does go ahead it'll be a pleasant surprise!

Things are already looking a bit more positive this evening though! We've already had our call with starve times and William is 2nd on the list this time, rather than 4th like last time! I also said to the nurse that he would be transferring to PICU post surgery and that he required a bed pre-surgery for his care routines. She said she was planning the beds this evening and would do her best to allocate him a bed as he's 2nd on the list.

We'd love it if you'd pray that we would have a bed on arrival! And that the surgery would go ahead!

In lots of ways this a better time for it to happen. Steve has time off because of the bank holidays, William is off school for Easter so wouldn't miss any extra school and Bertie bear's hospital outfit is ready (should the need arise for him to step in and offer a helping hand!). We had also ordered a very special blanket for William from America before his last surgery date which only arrived the day after he should have had the surgery. I felt so strongly that I wanted him to have this blanket with him so this time round we have it ready! The jigsaw pieces all seem to fit so please pray a PICU bed stays available.

Blended Diet

Just over a year ago we started William on a blended diet. "A blended diet is nothing more mysterious than regular food blended to a consistency that can be easily passed through a feeding tube." (http://www.foodfortubies.org/)

Apart from a couple of weeks when William was a tiny baby, he has always been tube fed due to an unsafe swallow. Up until a year ago he was fed entirely on a medical nutritionally complete formula, delivered monthly to our home, courtesy of the NHS. Athough William tolerated formula pretty well, we made the decision last year to try him on a blended diet where we blend up normal foods to give through his tube. This is becoming a more popular way to be fed if you have a tube but is still relatively 'new' in this country.

Years ago, people with feeding tubes would be fed blended food because medical formulas weren't available. Over time more and more nutritionally complete formulas became available which suited the hospital environment better as the feeds are sterile. Over time many more patients have come to live long term in the community with a feeding tube and there is now starting to be a return once more to blended diets.

We didn't take the decision to feed William a blended diet lightly. We knew it would be a LOT more work on our part, we had no idea how William's body would respond to normal food and we weren't sure how the medical team around us would react to our decision as we'd heard many mixed reports from other families. However, last March, we took the plunge and bought a very expensive industrial blender! We introduced food relatively quickly but took care introducing common allergens. We gradually weaned him from the formula and have (mostly!) never looked back! We have a fantastic dietician who has supported us and our whole medical team has been really supportive.

We decided to switch to a blended diet for a number of reasons. Firstly we felt it would add a bit of normality into our care for William. So much of what we do for William is very medical, but giving him regular foods gives us a bit of control back and let's us make normal parent choices about what he eats! Secondly we felt a blended diet might suit William better. I read an article written by a tube fed adult who reported that formula would feel heavy in his stomach and could make him feel sick whereas blended food sat a lot better in his stomach. Thirdly we hoped the diet would help to control William's mucus production which had become just a little ridiculous! This in turn would hopefully reduce his sickness. Fourthly we felt feeding him a blended diet was just a lot more natural. William has so many medical problems that we wanted to do everything we could to minimise him developing any problems with his digestive system. For us, we felt giving him a blended diet would potentially reduce the likelihood of this as it mimics more closely a normal way of eating.

As Eliza explained in her post here, William has three meals a day with 'drinks' of water in between. We tend to blend breakfast two days worth at a time. Lunches are blended in batches and kept in the freezer until we need them. His tea time meal is blended fresh most evenings as William usually eats a variation of what we are eating. William became dairy free a couple of months ago so this limits some of what he can have. We also have to be careful that his feeds have the right amount of calories without too much quantity so we use a lot of oils, nuts and seeds to add calories without adding quantity. We don't need to worry about the taste of William's feed so this give us a quite a lot of scope with what we can do! A typical day's meals might look something like this for William:

Breakfast - soya milk, fruit juice, weetabix, muesli, banana, pumpkin seeds, coconut oil
Lunch - seeded wholemeal wrap, salmon, tomato, carrot, spinach, flax seed, prunes, soya milk, hemp oil
Tea - Pasta, sausage, onion, carrot, watercress, apple, soya milk, rapeseed oil, chia seeds

Preparing his meals takes a lot of work! We calculate everything! Every family is different in the way they prepare, plan and give a blended diet. Lots of people don't calculate in anywhere near as much detail as we do. We felt this was the best approach for us as William gives no indications of being hungry or full. We also love any excuse for a good spreadsheet!!! Over time we have got more relaxed with it as we've got used to quantities so we now rarely weigh out his tea time meal, we just guess quantities. Thankfully William is given a comprehensive multivitamin so we don't have to worry about all his nutrients, but we make sure we give him the right amounts of calories, carbohydrates, protein and fat in each meal.

We use our special spreadsheet to plan every meal. On one page we have a whopping list of ingredients and the calorie/carb/protein/fat content per 100g.

Meal planner

Ingredients list

On another page we have our meal planner where we enter what we want to give William in a particular meal and it works out the total for each category and compares this to what we are aiming for.

The diagram below shows our blending process for making a batch of lunch meals. The ingredients are added to the blender all weighed out and are blended into liquid. The bread/wraps are then added in and blended too. Water is added until the blend is nice and smooth. The mixture is weighed and divided by the number of meals we have planned to make. It is then measured out into tubs for freezing.

On the whole the blended diet has so far been a success for us. While it does take a lot more time and effort to prepare and give, we enjoy planning his meals and varying what he eats. Since going dairy free we have noticed a big reduction in his mucus production which will undoubtedly help his chest to stay healthier and means less suctioning. We used to often get comments remarking on how pale William looked but now people comment on how well he's looking! He is sick a lot less because the feed is so much thicker making it harder for it to make its way back up.

Ultimately, like any parent, we always want to do our best for William. For me personally, giving William a blended diet felt like what I had to do to do my best for him. So far it has been worth it!

Eliza: Feeding William

Welcome to my first blog post!

My name's Eliza and William is my big brother. He's not quite like other big brothers but I still think he's the best big brother in the world! I'd like to tell you about some of the things William does a bit differently to other people.

I thought I'd start by telling you about how William eats and drinks. William can't eat and drink in the same way as most people do because he finds swallowing very tricky. Instead of putting his food and drink in his mouth like I do, we put William's food through a special tube straight into his tummy so he doesn't need to swallow it. William is very happy about this because he doesn't like having things in his mouth and it means he can have his food even when he's asleep!

William's feeding pump

The special tube that goes into William's tummy is called a Mickey button and mummy and daddy have to swap it for a new one every few months.

Just like me William needs to drink lots of water to stay healthy. He has his water through his feeding pump. This is a special machine that lots of William's friends have too. You tell the machine how much water William wants and how quickly he wants to drink it and the machine does it all for you! It's very clever. I like helping by pressing the buttons.

Here I am holding a syringe! William is having his drink of
water while he's asleep! He loves to sleep!

William has three meals a day just like I do. Most people who have a feeding tube like William's are fed a special type of milk as their food. The milk has everything they need in it to keep them healthy. William used to be fed a special milk called Nutrini. About a year ago though, my mummy and daddy decided it might be better to give William normal food like I eat. The problem is the food still has to fit down William's little feeding tube! This means all of William's food is mixed up by a big noisy machine called a blender. You can put any food in the blender and it will come out looking like a milkshake! William's food doesn't go through his feeding pump because it's a bit too thick so we have to push it into his tummy using a special syringe. I like helping with this! Sometimes William is kind and lets me use his old syringes to squirt water in the bath!

       Here's William's lunch ready to give

Mummy and Daddy do lots of maths on their computer to make sure William gets just the right amount of food because he can't tell us when he's hungry or full. William has breakfast just like I do with some weetabix, milk and fruit. For lunch he has a sandwich with some fruit and for tea he usually has whatever I'm having! Our favourite is Shepherd's Pie and banana for pudding!

It needs a quick stir first though!

Eliza's Blog!

Eliza has decided to start her own new feature on the blog!

Lots of children are interested in William and there can be a lot to try to understand with all his different machines and tubes. So Eliza is starting a new series where she will be teaching you all about life with a disabled brother!

Her entries will show up on the home page, or you can click on the option above to just see all her posts. Check back later for her first entry!

New look!

The blog has had a redesign! I've had so many ideas about articles for the blog so I thought I would get started by making it look better! Watch this space..!

William's Surgery

I thought this would be an easy way to update lots of people on where we're at with William's tonsil surgery!

He was supposed to have his tonsils removed last week but the operation was cancelled last minute. We had a really awful time at Addenbrookes and have since lodged a formal complaint in the hope of improving things for other families in the future. In a nutshell, they weren't prepared for a child of William's complexity on the ward when we arrived.

I have now spoke to William's fantastic consultant at Hinchingbrooke and discussed our options with her. Having the surgery at Hinchingbrooke isn't an option because there is no PICU and they don't have specialist paediatric anaesthetists. Due to William's complications he is high risk for anaesthetic so needs these specialist services on hand.

We have discussed a referral to another hospital, particularly Great Ormond Street. She is happy to refer us but has explained this will come with it's own difficulties. We would have a longer wait as we'd be starting the process all over again, none of the drs there know William and if he were to need an intensive care stay it would be very tricky being far from home, away from any dr that knows his case.

Our current plan of action is to try and speak to William's respiratory consultant at Addenbrookes. He knows William well, is lovely and is also a PICU consultant. Between us we want to establish whether we think it's worth still pushing forward with the surgery or whether we should take a step back and look at some things first. In a child like William the tonsils would usually be removed if the child was struggling with sleep apnoeas. While we know William has apnoeas we don't know how bad they are. We might therefore look at carrying out a sleep study first at Addenbrookes to determine how much of a problem these are. This could lead us to the decision that the surgery isn't worth the risk if the sleep apnoeas aren't too severe.

We also want to speak to this consultant to see whether he can have more of a role in preparing the hospital for William if we proceed with surgery. This could involve speaking to the surgeon and anaesthetist before surgery and ensuring William has a bed on arrival while waiting for his surgery. Until we've heard from him we're not sure what the next step will be.

While we are so reluctant to return to Addenbrookes after last week's debacle, it would be the best place for William to be if something were to go wrong as he is known to a couple of drs there, they are familiar with our usual consultant and we are close to the hospice. I would also hope it would be the shortest wait for surgery given our other options.

Thank you to everyone who has sent lovely messages, dropped by with gifts to cheer us up and prayed for us. It has really meant a lot to us. In the mean time, William is thankfully completely unaware of all the worry and stress and enjoying still having his tonsils!