Wednesday, February 13, 2008

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.

13 comments:

Mary said...

Wonderful news! Praise God!

ellen charge said...

whoooooooooohooooooo lol maybe he is saying i dont need this mum and one day he wont love u all

ypersico said...

absolutely fabulous!!! hurray for Reuben! Hurrarh for Jason and Catherine! Hurrah for the lovely Dodd family!!! Yay~! love,y

The Waggoner Family said...

Congratulations! This is a HUGE step towards oral eating! Reu, wait until you get to tast all the fantastic things your mommy will be able to give you! Way to go!!

Kristi said...

That is FANTASTIC! What wonderful news! :-)
So much to catch up on... and so much of it is great news! So happy for you - - you may have an oral eater on your hands before you know it! :-)
Also, sounds like you found a gem in your day nurse! Yay!

Hugs,
Kristi
(Catherine... thanks for the advice on my sad little attempt at getting the blog going! I actually pulled that "grumpy" post for the moment... don't want that to be the very first thing everyone sees now that I have let people know it actually exists! LOL!)

Candi said...

Yeah!!!!! I am so excited for you all!!!!! What an incredible and unexpected joy! I can't wait to hear all the fun things Reu is tasting! I would love to see the swallow study if you can post it. Luke had one or two modified studies in the NICU, so we never got to actually see them.

Ps. Thanks so much for the tegaderm offer. That is what we tried first and it broke out Luke's skin too. The only adhesive that seemed gentle enough didn't actually stick. The ace wrap is going better than I expected, so I guess we will use that for a while and see if his skin clears up.

Eva Nichole said...

That is wonderful I am so glad he passed!!
Hugs,
Crystal and Eva

MK said...

That is absolutely fabulous news!! Reu, way to go!!! Lucas has his next study in April and we're hoping for the same good news... ... HAPPY VALENTINES DAY

Mighty Max! said...

WOOOOOO HOOOOOOOOOOOO! That is wonderful, absolutely fantastic!

I still get so excited about Max eating and it's been over six months now. My favorite is when we are driving and he signs "cookie" and then eats one...and then wants another and another. (They are the lil' "cat" cookies from Trader Joes...delicious!)

Sounds like Reu will be there very soon too...this is incredible, really really really incredible!

Amy

Mighty Max! said...

WOOOOOO HOOOOOOOOOOOO! That is wonderful, absolutely fantastic!

I still get so excited about Max eating and it's been over six months now. My favorite is when we are driving and he signs "cookie" and then eats one...and then wants another and another. (They are the lil' "cat" cookies from Trader Joes...delicious!)

Sounds like Reu will be there very soon too...this is incredible, really really really incredible!

Amy

Linden said...

What glorious news! I'm thrilled for you all. The day Cameron passed his VFSS was wonderful! Now to work Reuben up to eating enough to no longer need the tube. You're right about patience...the road to being tube free is usually a marathon and not a sprint, but how great to be at the starting line! (smile)
Many blessings to you!
Rebecca
Cameron and Nathan's mom

Ericap said...

Greatttttttttttt, wonderful, wonderful news, real hope and excitement. You must be thrilled. We are so delighted for you all.
Erica

Geraldine said...

Fantastic Reuben! I can't wait to see you all on 29th Feb! Woo Hoo!"