In mid August 2018, we noticed Summer having difficulty swallowing her juice.

We were due into GOSH for a paediatric appointment weeks after noticing this unusual sound she has started to make while drinking liquids.

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Summer finally lost her Naso-gastric tube in July 2018 at the age of 15 months.

And to our surprise she was really enjoying her food, drinks and treats almost immediately.

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Its been a while since I have logged a story on here, it has been an extremely busy year for us as a family.

Once Summer's cleft repair was through we really took the time to concentrate on our family and was busy teaching her how to feed orally. Paul & I both decided to come off of social media and enjoy the moment of life as we approach a few more bumps in the road with Summers journey.

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Summer is now 21 months old. She weigh 10.5kg. Summer is still under a feeding nurse, a speech and language therapist, an early years practitioner, a physiotherapist, the cleft team at GOSH, Audiology at Kingscross and now the Gastro team at GOSH too.

Since Summer's surgery we have moved house so we have been extremely busy decorating and enjoying our new home in the countryside alongside lots of additional appointments too and meeting all new teams as we changed over our care.

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At an appointment with the paediatrician confirmed what Summer has started to do was unusual. All it was only ever labelled as was 'reflux'. I was sick of hearing the comment ''she should have grown out of reflux by now''. 

Summer was immediately prescribed lansoprazole and ranititadine - the medicine she took daily as a baby. She was also put on gaviscon.

After two weeks using both medicines daily we didn't see an improvement. The paediatrician suggested we tried an adult 'reflux' medicine called omeprazole, we were told this is something like £50 per bottle and is treated like gold dust. Confident in this new medicine we left Great Ormond Street Hospital after our visit and started the new medicine.

Three weeks on from our appointment there was still no improvement in her swallowing, in fact she seemed to be struggling more than than ever before. She made like a gurgling sound, almost as if she was gagging on the liquids she was trying to drink.

Our new feeding nurse suggested she could have a dairy intolerance. Made sense, she could well have.. she'd always been tube fed formula. Our feeding nurse suggested we try a soya diet, so off to tesco's we went to buy soya yoghurts and puddings along with other bite size snacks she could try.

We gave the soya diet a 2 week trial but there was still no improvement. We tried everything. We felt so deflated. 

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In October we were booked in for a follow up appointment visit to see a new paediatrician we hadn't yet met. She was really friendly and had a little girl the same age as Summer. She offered a warm approach and promised we would get to the bottom of whatever this could be.

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On 31st December, New Years Eve 2018, we received a referral from the Gastro Team at Great Ormond Street. We drove in as we usually do and found parking almost straight away. The hospital was quiet with not many people around. We arrived early and Summer soon found the play room. Finally we were called in to meet the Doctor. He asked a couple of general questions and checked over her height and weight and said ''we'd like to do some testing on Summer so we can get to the bottom of this''. Paul & I looked at each other nervously, equally relieved that finally we will have some answers.

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Tuesday 22nd January 2019 we were invited onto Kingfisher Ward.. a part of the hospital we hadn't been to yet - The Gastro Unit. The letter read, we are inviting Summer-May onto the Kingfisher ward for a PH impedance study, she will be required to stay overnight and the testing will be carried out over 24 hours.

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The day arrived, we hadn't stayed overnight in hospital for 7 months. Even packing the hospital bag made me emotional. We found the ward and were met by friendly nurses situated next to a really fun look sensory room and play room. We were lead into a room for a height and weight examination then shown to bed 13 on one of the small wards down the corridor.

Summer's name was called from a narrow corridor by a nurse who had a tongue piercing and some funky tattoos, she was clearly amazing with children as Summer warmed to her straight away which put both us parents at ease.

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The nurse explained that the Ph impedance study requires Summer having a tube inserted up her nose and down into her oesophagus for 24 hours. A bit like her feeding tube we thought... The nurse got her tray ready with all the equipment she needed then went ahead and inserted the tube. Almost immediately Summer's nose began to bleed. She already had a little bit of a snotty nose so putting the tube down was always going to be messy. Blood and snot poured from her nose, it was horrible to see. The tube was harder than a feeding tube, it has clear plastic on the outside and a thin red wire on the inside.

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The study was carried out for 24 hours, the end of the tube was connected to a small black box. The box had 6 buttons in which we had to press when she was: laying down, sitting up, drinking, eating, sleeping and playing.

The thin red wire inside the plastic tube measured the levels of PH (if any) in the liquid Summer was bringing back up after swallowing it.

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On the 18th hour of the study Paul, Summer and me went to the lagoon cafe downstairs for a coffee and something to eat. We were invited into a little function laid on by the hospital and some adults from outside the hospital. The room was buzzing with life, fun and happiness. We were approached immediately and Summer was offered a seat at one of the activity tables and invited to decorate her own cupcake. While sat down eating the half decorated cupcake impatiently.. Paul was asked if we minded being filmed. The function was being filmed as part of Paul O'grady's little hero's at Great Ormond Street Hospital. Summer was filmed shovelling the entire chocolate cupcake into her tiny mouth. Brilliant. Sums up our daughter Paul whispered to me in a laugh.

After the fun day afternoon we headed back upstairs to the ward to finish the remainder of the study before having the tube removed and being discharged. 

 

 

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We are awaiting the results of the 24 study and expect them within the next two weeks. The Doctors have said if she is suffering from reflux they will almost likely let her grow out of it. If it is not reflux she has, it could be a fault with her swallowing mechanism potentially caused while having her cleft repair. The other answer could be that Summers muscles in her food pipe are loose due to being tube fed for the first 15 months of her life. She could potentially need more surgery.

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As soon as we have the results I will add an extension onto this story.

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Thank you for reading,

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Referred to Gastro ...

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Jessica x

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