Nil by Mouth…

After a series of visits to hospital for chest infections throughout 2016, it came to the doctors attention that Edith had consistent changes on the middle lobe of her right lung. Edith had 4 x-rays in total last year, 3 when she was unwell and 1 when she was well, these all showed the same shadow in the same place. It was thought, initially that this was part of the infection but it soon became apparent that there was something a bit more complicated happening.

During this period (over the year) our community speech and language therapist (SALT) suggested that there may be an issue with Edith’s swallow. She asked if Edith had ever shown any signs of difficulty when eating and drinking i.e. coughing, gagging, spluttering, which she never has and also asked if she had ever suffered with re-flux, which she also hadn’t. She suggested a referral to SALT at the BCH for a Videofluoroscopy (a type of moving x-ray that allows the doctors to see what happens after food and drink is swallowed) to see if Edith was experiencing what they call, aspiration. If she was this would mean that when she swallows, tiny particles of food or drink are going into her lungs – yes this is as dangerous as it sounds!

This referral was made and we received the appointment date very quickly. I asked my wonderful cousin, Carrie to keep us company on the day for a bit of moral support and even though she had a very newborn baby, she wilfully agreed. I wasn’t sure what was going to be found and I wasn’t taking the chance of ending up crying alone in a hospital corridor. Edith was an absolute superstar during the procedure, it wasn’t anything horrific; all she had to do was eat like she normally would. I took along a variety of foods including her favourite yogurt. As I sat and fed her the doctors watched as the food was swallowed. I looked at her innocent little face displaying the joy at being fed a pudding before lunch and wondered what this brave little pigeon would have to face next. My worst fears were confirmed as the SALT told me that Edith had an moderate to severely unsafe swallow. I was told an appointment would be made to speak with our paediatrician to discuss what this meant and what happens next.

Edith enjoying her food…

Upon speaking to the paediatrician I learnt that the aspiration had probably played a major part in all of her hospital admissions. She advised that there was no immediate need to intervene but that Edith would need to be put on the waiting list for a PEG (a Percutaneous Endoscopic Gastrostomy Tube). Edith would be able to continue to eat orally untiime but if things were to turn in the other direction she would need to have a NG (Nasal Gastric Tube) to sustain feeding until surgery for the PEG.

At this current moment in time Edith is still being orally fed, which seems to be going ok. The waiting list for the PEG is roughly 8 months long; we should expect the surgery in the autumn. Edith is due to meet with the paediatric surgeon on 14th June to discuss the procedure.

Edith enjoying her favourite food…porridge!!

Initially this was a huge shock. The doctors are always saying “as long as her progress keeps going forward and she doesn’t lose any skills, we are hopeful”. Was this a loss of skill? Had Edith taken a step backwards? Does this mean her condition is getting worse? Thankfully, no. I have been assured by two separate SALT’s and our paediatrician that this is not a step backwards, merely a blip in the ocean. Even after the PEG is fitted directly into her stomach, Edith will still be allowed some ‘safe foods’ orally (custard, yogurt) and hopefully will one day, in the not to distant future, be able to have the PEG removed completely.

When we are babies our swallow is protected to a certain extent and because Edith is so slow developing it’s suspected that her anatomy is just catching up. So as the swallow would be protected in a typically developing child and then become less protected as they grow; this is the same with Edith except everything has happened much slower therefore she is much older before there was any issue. I think that makes sense, sorry if it doesn’t. Edith absolutely loves her food and we hope this is only temporary, but for now it is what is best and safest for our little bear.

Edith enjoying a mini milk…


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