Friday, December 05, 2008

Back to Theatre (Again!)

It has been another one of those days! Wills kept me awake most of the night complaining of pain and asking me to sit him up, only to slip down again and ask me to sit him up...this went on from about 3am until CBeebies provided a bit of a distraction at 6. I was getting a bit short with him and felt pretty bad when I realised later what he was going through - there are only so many times you can cheerfully pull somone up the pillows when you are sleep deprived!

The surgeon on call popped his head round the door at 8am asking how Wills was and what his tummy and stoma looked like. Seeing both were bigger than ever and learning about William's night, he promptly ordered a repeat x-ray and told me the day would be planned from there and that he was expecting him to have a contrast study to see how the dye travelled through William's new bowel. We never got that far. The x-ray showed the obstruction to be worse than yesterday and William was booked in to theatre as soon as the surgical team had seen it. This was a relief as Wills was in loads of pain and I was syringing out several loads of bile from his somach whenever he wretched, even though it was on drainage and filling up bags in between.

The two consultants who had performed William's transplant were both in today so worked together today to try and fix the problems he has been having. This time they were able to see a clear reason for the blockage. He had a hernia at his stoma. The bowel had folded over itself, causing the stoma to swell and blocking the flow through it. As a result, the bowel was full and distended and the only was was for this to be relieved was for everything to go up to the stomach. We are all really hoping that this will be William's last trip to theatre and that his bowel will now be able to get to work properly. We are letting it rest over the weekend and hope to re-start feeding on Monday. Meanwhile, he is fully morphined up and peaceful. He is back on 5 IV pumps with an assortment of fluid to re-stabalise him and, of couse, his TPN. He also has several syringe drivers of antibiotics, antifungals, antivirals.. all part of the usual protocol although some are being kept going a bit longer due to William's trips in and out of theatre. It has been a very tough couple of weeks and Wills really deserves a clear run now. He hasn't felt well enough to do anything at all really since his transplant. Even his beloved engines have been left untouched.

My Godfather appeared at the hospital just as William was about to go to theatre. This was a lovely surprise and I was treated to a lovely lunch (Christmas lunch and pud, a real treat!) and some great company. ALthough I would rather it hadn't been a theatre trip that enabled it, it was really nice to get out of the hospital and enjoy a conversation over a nice lunch. It is very isolating being up in a new city, away from all your friends and going through all this. Paul has been away on tour all week and can't get up until the middle of next week. This blog is great for being able to stay in contact and I get so much from all the comments. I do get a real sense that people are rooting for us and sharing this journey with us and it means a lot. Thank-you all. I hope we have some more good news and smiley photos to share from now on in.


daisymama said...

sending you a big hug across the internet - from one cubicle to another! love steph xxx

Holly said...

hope you both have a better weekend, and the op today has helped. i'm sure it won't be long till wills is playing with his trains again happily :) xxx

ducksdisease said...

Praying for a lovely long ladder & no more snakes :)

Becky said...

Hoping for less snakes and lots of nice ladders =]

Love Becky xx

Richard Weir said...

Sending you and Wills lots of hugs, and sending Wills lots of post-op get-well wishes and prayers. At least they are sure have a reason for the problems, which gives hope that things will finally start to move properly!


Rebecca said...

Hi Sarah hunny,

So sorry to hear that William had to go back to surgery, but I'm glad that they found a reason for it and hopefully they were able to fix it.

REALLY hope that William has a much smoother ride now and that his bowel can clear properly.

Thought you might like to know that after CF Clinic today, Seren asked to pop into the hospital chapel to say a prayer for William and for my Dad, so at about 4.30 pm today (Friday), we were saying some special prayers for William.

Glad you had some time out of the hospital and that you had a nice lunch!

Big hugs,

Becky xxx

Anonymous said...

I just wanted to wish you, Wills and the rest of the family all the luck in the world.
Lets hope this will be the last trip to theatre and things ill start looking up from now.
Love and best wishes
Julie xxx

meme said...

I am thinking of you all prayers are being said at church for William and you all.Will light a candle tonight at church.God bless you all you.Maria

Anonymous said...

I hope that there are a lot less snakes and more more ladders,
I hope the weekend is much better with no nasty snakes a long the way.

Love Emma xxx

Emmie said...

Hi Sarah, I check your blog every single day for updates and am rooting for you SO much. Poor little Wills, he's had such a tough couple of weeks but I really hope that finding this hernia and sorting it will help him turn a much needed corner. And poor you too as you must be absolutely exhausted trying to look after him on your own day and night and lacking in sleep.

Keeping everything crossed that next week is going to be the week that things really start picking up.

Loads of love xxxxx

Lorraine said...

I don't always comment, but I always read. I hope that William will start to feel a lot smilier very soon and that this will be the last trip to threatre for him. I truly feel for you. And your ear's must have been burning today as I was chatting about you and William with the lady who stitches the quilts - I hope it won't be long before William gets his - they are lovely.
Sending you a massive (((hug))), all the best, xx

suzie said...

Hiya Sarah,
I hope it's been a settled day for your wee man today, bless him. Good to hear you got to have a natter and a meal, you need a bit of time out, even if your mind was elsewhere.

Sending many stay strong vibes and I'll be praying, as always for William and all of you.