Bob’s story

“Some people never meet their hero I gave birth to mine”

Meet Robbie Beer age 5, better known as “Wee Bob”, lives with his mum Lesley, dad Paul & big brother Jack in Glasgow, Bob has been diagnosed with Myopathic Pseudo Obstruction and is TPN dependent since Oct 2012.

Wee Bob was born 4 May 2010, normal delivery (well, if 20 mins labour is normal) and discharged the same day.  The following day we noticed he slept more than usual and didn’t want to feed and began bringing up green bile that’s when we took him back to our local hospital to have him reviewed.  On arrival he was seen by a doctor and immediately blue lighted to Yorkhill Hospital for Sick kids.

The consultant on call explained to us his bladder was 5 times the size of a regular babies and his organs had been pushed up due to the pressure, he was Taken to theatre and his bladder was emptied and a super-pubic catheter was sited.

Over the next few weeks he was monitored in ICU, overtime he started to improve but there still was no explanation why his bladder never emptied…. we started discussions to take him home, myself and dad decided against a urostomy and we were taught to intermittently Catherise him ourselves and was discharged a week later.  A few weeks passed and we noticed Bobs stomach distending, Irregular bowel movements and continuous vomits, that’s when the visits to Yorkhill A&E began.

We were in and out hospital over the next year mainly when he became so distended and dehydrated., the hospital would use suppositories and rectal washouts and give him IV fluids for 48hrs and then we were sent away as again the cause for this was always Unknown.  In the end our trips to hospital became so frequent we were taught to do the washouts from home twice daily.

Then in May 2012 he underwent full thickness biopsies, it took weeks for him to recover and remained in hospital, the results finally came back 6 weeks later but they appeared normal although his consultant explained to us his bowel wasn’t normal to look at he suggested a referral to GOSH so we continued with his procedures in the meantime still with the frequent visits to hospital (our new second home).

After a weekend trip to Blackpool In October 2012, Bob became really unwell on arrival at the hospital he was taken to The resuscitation room where he had over a litre of bile pumped out of his stomach and put on IV fluids and transferred to intensive care unit.

That’s when he started to deteriorate fast. He was gasping for breath and becoming non responsive , fortunately his consultant from the beginning was on call and made a decision to take him to theatre. Robbie’s colon had become so large it was putting pressure on his small bowel causing a volvulus which was killing off his small bowel and turning his body septic, He had a total colectomy and half his small Bowel removed.  He also had an ileostomy and a gastrostomy placed in his stomach and central line placed.

The next few months were the hardest his recovery was slow and his ileostomy was refashioned numerous times meaning further blood transfusions and many more trips to theatre, there he remained for the next 7 months. Our consultant believed he had MMIH but a priority referral was appointed to GOSH again and he was seen in October 2013 where he underwent intense testing over 2 weeks.

In December 2013 we had a conference call between his Glasgow consultants and GOSH consultants and they told us he had Myopathic Pseudo Obstruction with nerve damage, that’s also when we were told there wasn’t a cure and would be TPN dependent for life… That’s the day our world fell apart!!

Over time, we picked ourselves up and carried on and I am so proud to say Our little Hero has grown from strength to strength yes he is TPN dependent and has bad days with chronic pain but he has learned it’s part of him and doesn’t let it hold him back…. He started school in August 2015 and participates in all the regular activities just like his hero, his big brother Jack. He loves animals especially Eric’s (penguins – happy Feet) and Pandas, he loves his anchor boys club and swimming lessons, he is an incredible little fighter and he doesn’t know it… You can spot him a mile away with his cheeky little smile.

One day we hope for a cure and this is why we fully intend to support PORT charity they give us hope for our Bobs future xxx

Love Lesley (mummy) xx

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