Case Closed (for now)

Ben is bag free! Hooray!

On the 28th of October Ben went into the WCH to have his colostomy closed. That is, all bowel traffic has now been diverted back through its natural course and things seem relatively ‘normal.’ I say that tentatively of course, it’s still early days.

Originally we thought we were in for a two night stay at the hospital, but it turns out that a 5 night stay is probably standard. The procedure itself is a simple(ish) operation for a surgeon used to handling complicated thoracic cases, but the recovery took a little while. Additionally, Mr Kirby covered Ben with Timentin Antibiotic’s to reduce the infection risk. I’m told this course usually carries a minimum of 48 hours via I.V.

Crashed on Mummy's bed

















Ben started out by fasting from solids and milk from Monday night at 6pm. On Friday he was allowed 40ml of milk every four hours. His first solid food after this was Saturday night at 6pm, and was one small mashed banana. 5 days with no solids.  Simon’s Dad could hardly believe that it was a possibility. “When are they going to feed him???” he kept asking.

As you can imagine, taking the joy of food away and replacing it with an empty stomach and low blood sugar levels made for a pretty unhappy chappy. That being said, Ben wasn’t completely unbearable. Exhausted, hungry and wobbly, but much better than one would think.

The prerequisite for Benjamin coming home was that he needed to have a bowel motion. Imagine the strange looks I got when I started clapping in the play room at the hospital when it finally happened! Who ever thought there could be joy in a soiled nappy?

Ben and his first taste of solids in 5 days..mmm Banana!

We’re all home now. Ben has an appendectomy like scar/wound on his tummy and very little pain. He seems to be glad to be home with the whole family, and in his own bed in a quiet dark room. (As am I!)

It’s here that I reach out to the staff at the WCH and the surgical team that look after Ben. Mr Kirby, his registrars, the Newland ward nurses and our gorgeous S.T. nurse Lisa Kimpton who looked after Benjamin through this journey and have given the most amazing follow up care. Not once have we been left with unanswered questions, we’ve always had the support we needed and have been able to rely on the fact that the medical/surgical part of his care is elite. Yes, I believe the word ‘elite’ covers it. Thank you all.

Welcome home Benjamin ♥

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!