Dear all,

We found out last week after a barium swallow that Jack’s fistula has re-joined itself and today we met with his surgeon who is going to operate to close it again on 20th Sept. He thinks it may have been like this for several weeks but we just didn’t know… the clues have been a bit more coughing than usual and especially during feeds, which we’d suspected might be him needing another dilatation but he had an endoscopy last month and all looked fine, stricture no worse than usual!

Jack will be 1 year old on 4th September (at least he’ll still get his birthday party!) we just wondered if anyone else had been through the same and if so how long you had to stay in hospital for afterwards etc.

Thanks,
Kathryn & Mark x

Hi. I’m mum to Josh age 4. He was operated on last year as his fistula grew back which explained why he had constant chest infections and coughs.
Josh’s op took 5 hours and as the trachea was swollen the doctors put him in a chemical coma for 3 days to allow the swelling to subside. All in all he was in hospital for a week. Within 4 days of coming home he was back in nursery proudly showing off his scar!
Since that frightening time he has blossommed and his speech and eating have improved beyond recognition. I think it is as well Jack is having this done so young and it is being picked up so quickly. Josh’s speech and eating was delayed before they found out why so maybe Jack’s development won’t be so affected.
I sympathise with you going through such a scary time but take it from Josh - it was worth it. And later on Jack won’t remember what he put his parents through.
All the best of luck to you all and let us know how you got on.

Love Ali, Grant and Josh

Thank you Jayne, I’ve been scanning old threads and found a few now(I have yet to find Harriet’s!). It makes you feel so much less scared when you read other people’s stories doesn’t it.

Ali - Thank you so much for sharing Josh’s story, it is really encouraging to hear of the benefits which Jack will hopefully get from having this done, instead of me just worrying about the time in hospital! It’s terrifying for me to think of him sedated as I haven’t seen him like that since he was a few weeks old.

This forum is just such a godsend! thanks x

Oh thanks Jayne - found it!

Sorry - not been on for a while.

If you need to talk, pm me and we can catch up.

Please bear in mind that Harriet is probably worse case scenario!!

Kay

Hi, well the scheduled operation to fix his recurrent fistula did not happen. Jack had his own plans again!!
He got what we though was a ‘normal’ stomach bug last Tues night/wed morn which after seeing the gp on wednesday we tried to manage at home. He seemed to pick up on thursday morning but then went backwards thursday night. GP advised us Friday to take him to our local hospital in Peterborough who discussed things with our surgeon’s in Addenbrookes and he was transferred there. He now has pneumonia (they cannot tell whether initially it was a chest infection that led to the vomiting or the vomiting that led to aspirating and the chest infection as we assumed).
So he is now on a drip and antibiotics to treat infection(perked up today) so now the plan is to give him a ng tube so he can be fed, but protect his lungs, and get him ready for an operation in a couple of weeks.
Does anyone have any experience of a child who has been eating orally (milk and stage 1 food) and then has to have a ng tube reinserted? Worried about oral aversions etc

Thanks
Mark

Hi Mark, this rollercoaster!! Glad Jack is improving.
Harriet is still fed via a gastrostomy tube. She had been eating but very small amounts i.e. 8 spoonfuls twice a day, then she had low oxygen which turned out to be 3 more fistulas!

As Ali said the surgery is hard but they bounce back. Harriet was discharged from ICU on day 4 post surgey and back at nursery the week after.

She is still nil by mouth until they check the repair is still intact (on 27th) We have been giving her tastes i.e. smears on her lips. Let Jack play with a spoon.
Thanks
Kay