Saturday, December 13, 2008

Three Wishes in a Silver Bag

Things are really beginning to settle down for William now. I say that with caution as I know only too well now that things can change but we are all much happier with his progress at the moment. William is now up to 10mls per hour of feed and will be going to 15 in a couple of hours time and then a 5 ml increase every 12 hours. We are just about inching our way past that nemesis snake and all is looking good. The main problem for Wills at the moment is one we have known of old - fluid balance! Although nothing like the huge volumes his old bowel was losing, he still has high stoma losses and we will need to get to the stage where this can be replaced with boiled water via his gastrostomy before we can go home. Along side fluid balance comes electrolyte balance and William is still needing an infusion of this and that to correct electolyte deficiencies. We all hope that we are past the stage where he was unwell and unstable but we are likely to enter a frustrating stage now where we get everything working properly and balanced to reach the level of stability needed to be home. This can take a while so patience and that idea of taking things as they come will be important over the coming weeks. Strangely, and typically William, his bowel is nocturnal. Typically, the bowel slows over night but William's stoma pours more over night than during the day, despite the fact that he is currently on 24 hour feed and TPN!

Now things are more stable and I no longer have to worry what the next hour will bring (at the moment, I have to keep reminding myself of that!) I am able to reflect more on our experiences over the last weeks. One thing that has been a tremendous source of comfort and support to both William, Hope, Ellie and I, is the amazing generosity, kindness and care that 'strangers' have shown to us. I use inverted commas for strangers as I hope many of these people will soon be people I would class as a friend. William continues to get a real boost from his post, a lot of which comes through the fantastic Postpals This is an amazing charity led by fantastic people who really do make such a difference to children like William. Thanks to everyone who has written and sent him, Hope and Ellie parcels. I will update our Postpals page with more detailed and individual thanks but I will say thanks to Becky for the lovely pillow case you made him. He is really chuffed with it.

Today, I was just popping to the kitchen to get a top up of William's feed and bumped into someone at the door who obviously knew me. It was 'Aunty P' as she posts on the comments page. Aunty P is a trustee of the charity The Donor Family Network and someone I have got to know through my blog and the general transplant community that exists on the internet through the various blogs and forums. William is a bit on the shy side at the moment but Aunty P, you were a huge hit! He told me after you had gone that you were really funny and hoped he will see you again soon. Aunty P is also my Christmas Fairy! She mailed me some time ago offering to grant me one Chrismas wish to help me have a good Christmas in hospital. I am sharing this story on here because it worked out so well that I got three wishes in one and because it reflects the true meaning of Christmas. I would have wished for friends as it can be very lonely up here. I miss my home Church loads and would also wish to have that feeling of being part of a Church and being with Christian people to talk and share with. However, knowing that could well be rather tricky, I wished for some lovely wool to knit while I watch Christmas TV with the idea that it would feel rather cosy. Unbeknown to me, Aunty P leads a knitting group. She arrived today with all my wishes in a shiny silver bag. I had an extra present. A prayer shawl knitted by the group. This is a lovely item. It is a standard pattern, based on stitches in 3 to represent God the Father, Son and Holy Spirit. It is knitted with love and then prayed over and blessed before passing it on as a gift. The recipient can then feel it and snuggle in it to feel loved and prayed for. How lovely is that! In the bag was my wool and pattern to knit a beautiful soft, blue shawl for William. The bag also contained the Church newsletter and magazine and these came with an open invitation to come to events when I can, and the offer of a lift to get there and back. Along with this is the offer of people to come and visit me now Wills is getting better and things are more stable. So you see, my knitting project turned out to be something so wonderful and something I hope to take back to my own Church when I return home. I already have someone in mind to knit one for when I have finished William's. As well as this, my wishes of friendship and Christian community were also granted. I would already call Aunty P a friend.

These things are what Christmas is really about and something else that I will take away from this transplant experience that wil enrich the rest of my life and make me a better person.


craftyclaire said...

It just goes to show how our Father in heaven knows what we need, you have shown great preseverence and faith which has now been rewarded. I'm sure that you are gone from the day to day activities of your Church but not forgotten. You have I'm sure many Brothers and Sisters in Christ praying for you. It is a wonder of our modern day life that people we would probably never have heard of just a few years ago top our prayer list and though we may never meet them are that strange mix of 'stranger' and 'friend'.
I am so glad that today has been so good for you. ( I know that you will not be offended by the Christian nature of my comment and I sincerely hope that I do not upset/offend any of your readers).

Rebecca said...

God bless Aunty P!

What a lovely post, and I'm so glad that your Christmas wishes were granted!

Love and hugs,

Becky, Seren & Dylan xxx

Becky said...

I'm so glad thing are looking up, and so glad he liked the pillow case! Lots of love and best wishes, Becky xxxxx

suzie said...

Oh Sarah reading that post gave me a lump in my throat, a nice one though, not a sad one. You expressed exactly how I feel about my church, the wonderful Christian people in my life and the real meaning of Christmas.

I'm so glad to hear things are more settled for William and I'll be praying for you all, as always, when I go to church this morning.

Bless Aunty P, what a special person to have in your life.


diddyangel said...

What a lovely post :) Will pray for you all at church this morning as usual but also for people like aunty p :)
Look forward to more positive posts its amazing to see your photos. Hope YOU are ok lots of love xxxx

Anonymous said...

I am so pleased that thing's are settling down for William.

Hope things continue to go so smothly.

Lots of love & hugs,

Emma x

vikki said...

I'm glad we are able to do something how ever small, I think of you all often (including the girls) and check the blog through out the day to see how Wills is doing.

Loads of love,

Viks x

SherryB said...

Aunty P sounds lovely. I baked chocolate & orange cupcakes today. I will take to work tomorrow and ask people to enjoy a cupcake in return for the donation. I'm up to £200 sponsorship already!