He can swallow!!!!! Study passed

Huge news today. Reu passes his swallow study.

The videofluoroscopic swallow study is an xray study of swallowing function. Applesauce is mixed with varying degrees of thickening agent and radioactive barium, the passage of which can be tracked from mouth to stomach, thus testing his ability to swallow food and drink safely and comfortably. 6 little cups are lined up with the aim of starting with the thickest and progressing to the most liquid texture, being water. The radiologist takes moving xray images of his mouth and throat whilst I stand in front feeding him each of the textures in turn, and ironically wearing lead-weight protective clothing to protect me from exactly the stuff which I'm trying to get Reu to swallow. Funny that. My focus is to get him to eat as much of each as possible until I'm told to move on to the next texture. The radiologist announces he's seeing 4 or 5 swallows per texture. We stop before giving him water as that's always harder to swallow. There is no aspiration and the study would be instantly curtailed if there was, I'm told. I don't think any of us expected this result. I really arrived with pretty modest expectations about his ability to swallow. The fact too that he's accepting the food and hasn't developed an oral aversion is a big step in itself.

It is the most extraordinary thing to watch on video replay. A moving skeleton of Reu's face and neck shows Reu's big tongue accepting the food, pushing a little out, and then swallowing, the black blob of barium radiating towards his stomach. It's a joyous sight and I'm so excited by it. None of it goes down the wrong way. I look forward to getting the video so I can post it on here and hopefully pictures will better explain what I'm going on about.

A little on Reu's feeding history. When he was born, he was breast fed for a few minutes before he was whisked away from me as his skin turned a dusky colour, indicative of aspiration. He was then given a feeding tube (ng) through his nose and over the next few weeks, we worked to increase the volume he received through this tube. On 2 occasions, when we reached the maximum food for his weight, his reflux disorder would cause the food to come back up and potentially go into his lungs, which can cause aspiration pneumonia, infection caused by food entering the windpipe.

We were never able to migrate to oral feeding with Reu and as is extremely common in the CHARGE community, Reu underwent surgery to insert a gastric feeding tube, or "G-tube", through a small incision in his abdomen into his stomach, thus bypassing the need to feed orally and thereby reduce the risk for aspiration pneumonia.

I'm thinking of today's result, no evidence of aspiration, along with the gastric emptying study in December which indicated no evidence of reflux as two huge steps towards one day being weened off the Gtube and Reu and maybe feeding 100% orally. Going forward, we'll work with our new OT, Juliana, at the Regional Center on oral feeding, tastes, sucking, swallowing, all these things which we all take for granted, but which actually involves a good deal of coordination to achieve. Patience will be back on the agenda as we cautiously move to the next step.

If this is all confusing for the non CHARGE community, can you imagine feeding being only 1 of the 13 disciplines we've had to get our heads around in the last 9 months. Cardiology, GI, pulmonology, audiology, ENT, opthalmology, urology, endocrinology, cranial facial, general paediatrics, PT, OT, ST. Reu is doing fantastically well in so many of these and we're not doing too bad ourselves on the education either.

I take Reu and Christine his nurse up to the PICU to see the gang and later the NICU. I'm so immensely excited about the accomplishment that we have a right old laugh with everyone. I love walking around the hospital, showing Reu off, where it seems so many people know his name. I'm highly impressed by Dr Sylvia from Cardiothoracic remembering him and me by name in her Texan drawl. Dr Stanley is in the cafeteria talking about Upminster, our shared home town, and London's bendy buses. Only a couple of minutes before I'd been telling Christine about the colourful Dr Stanley and how we always discuss the buses and Upminster, so the encounter was uncanny. Everyone there knows and loves the reuster.

We pop into ENT and ask Jiffy to look at his trach as we're concerned there are granulomas but it appears it's scar tissue instead and doesn't need treating. We also see Pediatric Surgery about the elusive Mickey button refusing to stay put and order a different kind, a bard.

Perhaps Reu's just telling us. Gtube? Don't need it. Believe me, I can swallow.