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!