Jam tomorrow!

Today we are mostly talking about food!  William would have liked a boiled egg for breakfast but had to settle for weetabix instead.  He is being really funny talking about all the things we are going to make when we get home.  Apparently we are going to make strawberry jam (have never made jam but we'll give it a go!) to put on 4 pieces of toast and some scones we will also be baking.  Madeleine and I can have jam on scones but not toast that is for William only!  

He is almost tube free so hopefully later we can go for a walk to the playroom.  All very exciting.

Yesterday he waved to the pets therapy dog at the door who waved back! It is so nice to hear him really laughing again, he is being very cheeky and chatty today. We have had lots of special treats during his stay, the radio lollipop people helped him make a cool door hanger with dinosaurs, the play specialists gave him some really cool monsters to make to encourage him to sit up in bed and today Dr Bing Bong, Dr Bananas and Dr Wee Wee came to visit us and told lots of silly jokes the punch line to most seemed to be poo poo which went down very well!

The change today is huge, there are no more iv lines, no more beeping monitors, thankfully he hasn't forgotten how to wee so now his catheter has gone we are using the loo brilliantly.  The new stoma is doing what it should so we are aiming to leave on Friday morning.  Keep everything crossed for us!!

What a difference 24 hours makes!  Next stop jam making!

Possibly, maybe, tentatively turning a corner?

W continues to make positive progress slowly but surely :)  lots of big steps today, the epidural is gone, the morphine is gone, he's had some milk and some toast and is sleeping through the bake off!

If all goes well he won't need to go back into theatre tomorrow to have a feeding line inserted and if he keeps eating and the new stoma works well we might (whispering!) be able to come home soon.

He is so much better as you can see: 

He is very skinny now and needs more rest and recuperation but I am hopeful :)

Next stop Sandy Balls!!

Calm after the storm

We've had a very quiet day today.  W came out of surgery at about 11 and spent a couple of hours in paediatric ICU before coming back to the ward.  His emergency procedure was a success and his small intestine has been untangled from the space it decided to move into!

Today he is very sleepy and grumpy, he is sore but so much better than he was yesterday.  He can move which he wasn't doing at all before and so I have spent a lovely day sitting next to him watching tv and periodically untangling the 6 lines coming out of his neck each time he rolls over.  He must be better because he called Paul poo poo!

Paul was here last night which was really nice and he has gone back to collect Maddie now.  Next emergency is to bring me enough clean clothes for another week :). 

After such a busy and worrying night it is nice that it is the weekend and the hospital is quiet.  This morning I walked to the car to swap dirty for clean clothes and saw these beautiful trees.  Sometimes you just need to stop and see the small good things that are all around us.

Nothing is ever straightforward!

One thing we have learnt on our Hirschsprungs journey with William is that nothing is straightforward or predictable!  He started to go downhill a little yesterday and was really unhappy today, after lots of monitoring he had an X-ray that showed he has an obstruction in his small intestine above his stoma, not connected to the previous surgery but it needs to be fixed so tonight he is in the emergency theatre having the blockage sorted and a new stoma formed.  All very worrying but at least it happened while we were here and had Mr S on hand to sort it out.  You have to have respect for someone who will stay on all evening to operate after he has been at work all week, we know everyone here will do their very best to get William well again quickly.  It is seriously impressive and makes me want to drag the Tories round to see amazing NHS service in action (after they have taught y9 for a day  of course!)

Anyway fingers crossed he will be out of theatre late tonight and on the mend over the weekend, hoping to get home mid / late next week so I need to email home a list of clean clothes I need!

Before all the drama started in William's room this happened in the corridor!

Bet that is the last time G agrees to call in to see me to bring hot chocolate on the way to a day out with Claire.  Attacked by Darth Vader then dragged by the wallet round Gunwharf Quays by his wife.  You have to feel sorry for him!! And photo bombed by Ariel the mermaid :) 

A room with a view ...

I am starting to really like the view from g4s after 3 years of visiting!  Today you can see a huge cruise ship in Southampton Water and you get a real good view of the weather up here, it is a bit like being back in OP tower!

In my extensive(!) experience today is actually the hardest day, waiting on your own outside theatre can be very boring and you are anxious but at least you can eat and go for a wee!  Once they get back to bed you are needed all the time for hand holding and talking to lots of different people.  Today has been all about trying to manage his pain, which isn't easy when the patient is three and just says my tummy hurts to every question.  But there are lots of experts here and they are all working on it which is all we can ask for really.

So back to that view, I like it best at night when it is quiet(ish!) and the cranes in the ship yard are lit up, very sopranos!!

Best try and get this boy to sleep so I can eat my packed tea my mum bought me! It looks delicious but you can't really eat in front of someone who is nil by mouth so I keep waiting hungrily!!

At the end of a very long day ...

W is asleep and ok, he has morphine and an epidural so he is comfy and very tired. He was in theatre for 8 hours in the end so it has worn him out.  

Paul and I had a carb filled lunch in the a teen this time without an England World Cup match in the background.  I read a book (!) and watched two episodes of peaky blinders so am trying not to talk yam yam.

We got down to see w at about 430 and everything seems to have gone well , everyone is very pleased with him.  

A little out of focus picture of his drip stand with his name on that he wrote yesterday with the nice people from radio lollipop, the other side of his door hanger is dinosaur stickers :). Everyone here is so nice!

A demain xxx

Isn't it ironic ...

I am channeling my inner Alanis Morisette today :) William is in theatre and was very cheerful as he went in, there are lots of toys in reception and animals to spot on the walls.  His anaethesathist is lovely and was really nice to us both and laughed a lot at his flamingo joke - why did the flamingo lift up one leg, because if he lifted up both he would fall on his bottom!  A gigglebiz special!

Anyway the irony is william is having his second epidural today, I have had two children and none!  People keep saying 'you know how effective it is to stop feeling in your abdomen' nope I just tripped out on the gas and air!

We have had lots of lovely messages and prayers today, thank you.   We will let people know when he is back in his bed and on the mend.

And it is raining just like Alanis sings!!

I'm going postal!

Going postal is another project by Julie Kirk, I am genuinely inspired by these ideas not just a crafty cyber stalker!!

Anyway I have made a travel journal ready for our trip to Sandy Balls at half term.  We did book our holiday mostly based on the name of the camp site!!  I have made a postcard for each day that we will be there, we will write them each evening, then when we get home we can add some pictures and final comments.  They look like this :

I am very much looking forward to writing them, not least because the holiday will be just a week after William comes out of hospital.  I am a bit anxious as he doesn't have a very good track record when it comes to holidays and we have cancelled lots in the last few years to go to Southampton instead!  I am hoping that being closer to G4surgery will mean we don't need to visit :) 

We are off to hospital next week and he is in theatre all day Wednesday.  I am hoping we will be home by the following Monday which gives me a week to recover and do the laundry!

Check back next week for an update :) 

Katie x

My month in numbers - September 2013

I am trying my first month in numbers, a way of recording what has happened this month using numbers linked to stories.  It is an idea from Julie Kirk's blog notes on paper, find out more here: Month in numbers

So to the numbers:

5 books read this month,  2 real paper books from the library and 3 on my kindle.  During the holidays the children and I went to the library more often to do the summer reading challenge,  it was really fun to choose books together even if William had the counting to ten in Italian book over and over!  I picked up a couple of books on the way out and I had forgotten how good it is to try new things from the library.

1 day spent on the children's ward this month with William tripping out and watching the 3D tv in the treatment room.  They are so nice there and make our visits much easier than they could be :)

22ish LSNED pages completed!  I have really enjoyed doing this and recording my 'lessons' everyday, the combination of reflection and craftiness has been fun. Thank you to my fairy godmother who helped me win a place :)

21 square metres of garden gained by clearing the rubbish, we have cleared more space than we will build over next year.  Two lovely men and a van just got rid of everything and left us this lovely open space for maddieland and williamland to be established.

1 birthday for a new cousin, and 1 lovely birthday cake baked and decorated by Madeleine and William.  They were so cute choosing which shapes to cut out for the top.

Season 5 of sopranos completed :). It is bittersweet to start season 6 as it is the last one we have to choose a new box set soon! Breaking Bad maybe?

5 tickets for return journey to Birmingham for fabulous weekend with Kate, my oldest and bestest friend.  Just lots of catching up, kir royales and fabulous shopping for new tops!  I was especially pleased with my tops from COS with gorgeous packaging that I have ransacked for crafty recycling. Watch out for a London Town map layout on the crafty blog soon :) 

91! The number of photos William took of me and him laughing with the iPad,he discovered the paparazzi mode if you keep your finger on the button and laughed so hard while he took them.  It is moments like this that I gave up work for, definitely worth it today :) 

10 mornings that Madeleine has gone into school with a smile thanks to her fabulous teacher Mr P :) he made her star of the week for being cheerful and it has really encouraged her.  It also means I have had one day this month - the first in 2 years (!) - where both children have gone into school/ preschool without crying or being prised off me.  So much nicer for all of us.

And now the communal count: 

5.1 miles is the distance from home to my first school St Gregory's.

A pint of milk from the milkman is 75p and we have had 60 this month! Not bad as one of us is dairy free :) 

I will be making this into a page in my smash book and posting it on my crafty blog, I need to find a way to combine the two!

A plus! Ktb x