Tuesday, September 1, 2009

It's A Date


I'm constantly amazed at how raising children can bring such stark contrasts in emotions in such quick time lapses.  Yesterday my mobile phone rang, and when I saw the calling number listed as 'Unknown Private' I felt a lump in my throat. I knew it would be Meg from admissions at the WCH arranging Ben's next hospital stay.   Not two hours later, Ben took his first steps!  

Ben's next operation, the Soave Pull Through, has been set for September 16.  We're hoping for a 5 night stay in hospital, but have been told to expect more.

As one would expect, we're quite nervous about the outcome of the procedure.  This will be Ben's 5th visit to theatre with Mr Kirby, and each time carries a certain amount of anxiety. Because of the nature of this next procedure, and the higher risk of post operative complications, the level of anxiety is understandably increased.

We have friends in the HD community that have paused their children's journey at the stoma stage. That is, they have decided to keep the colostomy bag and not go on to have Pull Through surgery to avoid the risk of post-op complications.  And lets face it, life is good with the stoma.  Ben eats, he's not at risk of enterocolitis, his weight gain has been great and he's happy.  With the help of his amazing Stomal Therapy Nurse (STN) Lisa Kimpton we've learnt to manage the stoma and his appliances with little fuss.

So why proceed?

  • To offer Ben the best chance at a 'socially normal' life.
  • Because we have confidence that Ben's surgeon is superior to his peers in the surgical treatment of bowel conditions.
  • Because you have to have faith sometimes that a little luck is on your side!

3 comments:

  1. Great idea for the blog! I definitely understand all the anxiety you're experiencing and will be thinking of you on the 16th!

    xoxx

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  2. Woohoo! I am excited for you and will be praying that it goes off BETTER than expected.

    It is so wonderful to see these HD kids make progress. Every step ahead is encouraging.

    Thanks for blogging about Ben's journey.

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  3. Oh Karla, some how I missed this post before, and you make some excellent points. Im one of those mothers that beat myself up over and over again for not just letting my baby keep his colostomy...as youve described there were so many benefits to keeping the colostomy. Now at the age of 3, our hopes of him living a normal life involve us waiting between each episode of Enterocolitis and bad bacteria build up...I hope your little Ben has so much better luck than Dylan did...Dont let this scare you though, look at all the kids that the mums post about on HT, they are healthy and doing awesome!!!!!! Best wishes to little Ben, I hope he continues to do well, and pooing like a champ!!! Well done on the blog too its wonderful!!!!

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