Jenni’s Story – The Second

... by Jack's mum

Jack is now six and a half years old and it has been an action packed ride for the whole family. Jack was born after a normal pregnancy and it was a running joke in the family with his two sisters that boys were poo machines. He was always having runny dirty nappies - up to 18 per day. After numerous visits to the Doctors and being dismissed as toddler diarrhoea, it escalated after his 2nd birthday to include blood and mucous, luckily we had a very switched on overseas registrar, when we presented to local emergency. He agreed it was serious & ran lots of tests; we then headed back to the local paediatrician and basically got stalled for about 8 months with various elimination diets etc.

Finally my husband and I went together demanding further testing, Jack lacked energy and was the whitest little boy you could meet. We were finally sent to Melbourne for scopes, Jack was diagnosed with severe Ulcerative Colitis, this was prior to his 3rd birthday. What was supposed to be an overnight trip ended up being a weeks' stay. Once home Jack's condition continued to deteriorate and we had no success with our local paediatrician, on our second visit to him within a week I went with our bags packed and told him we were not leaving until Jack was admitted to hospital, which he did quite reluctantly . A long, long week in Wagga Base Hospital ended with Jack being transferred to the Royal Children's Hospital in Melbourne. As a family it was 'well you go with Jack, see what happens', Dad will stay with the girls & head down to Melbourne once we knew what the plan was. We were on a late commercial flight, first chance I had to read the referral (as you do) and found we were being sent to Melbourne with a view to a colectomy. So here I am on a plane with an Avery very weak child reading that our child faces major surgery. It was an incredibly distressing time- had we known as a family what was going on we would have come as a family. We hit Melbourne & I called my husband, telling him what was going on, then I had to find a taxi - all of which the drivers tell me they don't have child seats and no one seemed to know where the hospital was. I don't think anybody could have made that day any harder if they tried.

After many weeks in hospital trying drug therapy we had no luck, we had to close the doors on our Engineering workshop and hope we could pick up when we got, whenever that maybe. We had Mum sleeping on the lovely fold out bed & Geoff (Dad), Hayley & Jasmine living in Ronald McDonald House. It was a 6 week stint that ended with a sub total colectomy, only weeks after his third birthday. Suddenly this little boy went from a child who could barely speak because his immune system was shutting down was sitting up & speaking within days. WE WERE SO HAPPY.

Many people think a stoma is the worst thing that could happen - to us it was the best thing to happen for us. Don't get me wrong it has been a hard road. I have lost count of the number of surgeries, admissions - stopped counting after 30 - it got too depressing, general anaesthetics, naso gastric tubes when he had obstructions etc. But Jack is here 90% of the time. Most people would not know he has a problem, he plays hockey, goes swimming, and participates in all activities at school.

We have been told that Jack is definitely an odd case, not the norm, Roma the stoma will be 5 years old in December - Roma gets a cake every year. The other 10% is hard work, our local hospital is 1½ hour drive, we use Albury Base Hospital now, following Jack's surgery we found it necessary to change paediatricians & hospitals, and the Royal Children's Hospital is a 5½ hour drive .We also found we had to change schools to get the proper care, but found a much better school. Our family has become very adaptable, Dad is great at taking over the reigns when Mum and Jack are away - which often happens at an hour's notice, the girls manage incredibly well even if Mum and Jack have missed some of their milestones i.e. first hockey game, birthday parties etc.

The family motto is 'The plan is no plan' everyone just rolls with the punches; it has made us a very tight and resilient family.

The above was presented at the "Who Cares For The Carers?" Panel Discussion as part of the Y.O.U. Inc Meeting held in conjunction with the ACSA Annual Conference (October 2010)

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