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'!