We had Gideons’ swallow study this morning at Seattle Childrens. Sadly, I did not prepare him well for this study and practice bottle feeding him but once prior to the appointment. It’s pretty neat how they do it, it was fun to watch except when he got upset but we gained more information about how we can better care for him.
They strap him in a seat and try to position as close to how he is positioned at home when he nurses but that’s nearly impossible to do in a hard plastic chair that doesn’t bend or move so he wasn’t positioned properly to begin with. We later learned, that didn’t matter anyways.
The get the X-ray machine all set up next to him ready to video his swallowing.
They had him drink some milk from his bottle then switch to a bottle with barium in it and turn the X-ray on while he was drinking to see what route the liquid took as he swallowed it. It was neat to watch him suck, swallow and breathe… until he micro aspirated and he got the tiniest drop in his trachea instead of his esophagus where it’s supposed to go. Shucks. That’s what we were hoping wouldn’t happen. They switched back, fed him some more until he was fatigued (eating is an aerobic event for him which makes him tired quiickly) and switched to the barium again for just a few swallows until he aspirated a big drop of barium when he was tired. Double shucks.
Then they tried the side lying position which is closer to a nursing position and he seemed to do great… until he aspirated another big drop. Triple shucks. I was sad leaving there because i feel like he “failed” the test and Bo reminded me that it was a study to gain information which we did and it wasn’t something to pass or to fail. To me, had he not aspirated, we would have gained valuable information just the same but it would have been a pass, something to celebrate! A small milestone we can consider a victory in his growth and development so I left there a little sad at the next steps and what it will likely lead to.
We already have an appointment scheduled with ENT at the end of the month and Audiology as well to re-do his hearing test we did before. They are now going to add a FEES study when we are there which is a fiberoptic endoscopic evaluation of swallowing. Basically put, they shove a camera up his nose into the back of his throat and have me breastfeed him and watch the liquid go down that way. Then they can have accurate results of how he breastfeeds as well as how he bottle feeds and if that comes back positive as well, he will likely get his NG tube replaced and have to go back to exclusive tube feeds again until he is stronger and he can swallow properly.
I left there feeling a bit sad and upset. Feeling defeated, like we have taken a step backwards in his development but also trying to count my blessings. It’s hard not to walk though the halls at Childrens and not be counting your blessings as you see some challenges that others are facing. I KNOW we are blessed beyond measure, but I am a bit sad that he may have to get the NG tube back in then we will be back to me pumping, measuring everything, having him stuck to a machine for 30 min 5-6-7 times per day. But that’s ok, I can be sad about it for a minute then be thankful that we have this technology and the resources that will help us to better care for him and do the best that we can for him. It would also probably be short term, a few months+, until he gets stronger and has better muscle development. I was hoping we could avoid the tube prior to and after his next open heart surgery but if that’s what’s best for him to grow healthy, strong & well, that’s what we will do.
As far as thickening liquids for him instead, they said that’s very challenging for kids with Trisomy 21 because of his low muscle tone. They also did confirm today that he has reflux, so not only does liquid go down the wrong pipe when he swallows sometimes, it also shoots back up into his throat from his gut and can then go back down the wrong pipe again with his stomach acid, etc. Because of the low muscle tone, the rings in his esophagus don’t move fluid down the way they should and his epiglottis isn’t as strong as it should be so if we were to just thicken breast milk for him to drink, it would likely just pool up and drip slowly down the back of his throat and be worse for his digestion and aspiration than liquid breast milk is.
We’ll see. The team from today is contacting his cardiologist today after they get the report done and told us for right now to keep doing what we’re doing (exclusively breastfeeding) and after we get the FEES study done, we may adjust at that point. The cardiologist will watch the study and read the report and decipher whether it’s severe enough to have me stop breastfeeding or not.
He is getting fitted for his SPIO suit next week, that may help with his strength and development as well, we pray that it does. We are just thankful that he has remained healthy with his high risk of aspiration and pray that continues as well since aspiration usually causes respiratory illness which we absolutely can not have with his cardiac/pulmonary status.
Prayers for him to grow much stronger over the next 3 weeks and for a negative result on his FEES study!