Nov 19 Update

We started out the week working hard in home therapy and getting lots of help and love from siblings. 🥰

Then on Friday, we had to go down to Primary Children’s Hospital for a swallow study. I almost didn’t go because I didn’t feel like they would tell me anything I didn’t already know: he can’t swallow thin liquids, and he needs his milk thickened. Yep. We know.

He was struggling with his feeds a few weeks ago, so we increased the level of thickness in his milk, and he’s been doing great. No visible signs of aspiration. But he’s been a silent aspirator all along, so I wanted to go and make sure there wasn’t anything we were missing with his feeds.

So we went and, once again, didn’t have the greatest experience at PCH, but once we finally got into the study, I was really grateful to be there.

They gave Matthew vanilla flavored barium in different levels of thickness by bottle and watched for aspiration (liquid getting in the airway/lungs) on the screen. It was really cool to be able to watch what happens when he swallows. Unfortunately he aspirated with every level of thickness. This is most likely caused by his Trisomy 21. He has what is called a “delayed trigger” which means that the message to/from his brain to close off the airway is just a little slow so some liquid is getting through. It’s a developmental issue, and it’s common to see delays like this in kiddos with Down Syndrome.

They also gave him barium in a solid pudding-like form. It looked like marshmallow cream. He did really well swallowing that without any issues. They gave him a binky to help him suck and get it down.

So once the study was complete, the doctors met with the feeding therapist to go over the results and what they observed and then the therapist met with me to go over all that. And I have to give her a shoutout because I could have left that meeting in a puddle of tears feeling completely defeated and overwhelmed. But she helped me feel at peace and confident, having all the information I needed.

So, from here on out, Matthew will need all of his liquid feeds by tube. Luckily he still has his G tube in place. He is allowed to start eating solids but that’s really just for pleasure and the needed sensory experience. Breastmilk is still his only real source of nutrition…until April….so back to tube feedings it is.

The therapist told us that this is not uncommon with kiddos like Matt and that he will likely need all his liquids administered by tube for several years…maybe even until he’s 9 or 10. Deep breath. This was a big surprise for me. But the good thing is that he should be able to eat without any issues. It’s just the liquids that are causing problems.

So, that’s where we are at. They will do a follow up study in a year but there’s not a whole lot of optimism that anything will have changed by then. Who knows, though, with this kid?

Obviously this was not the news we expected or were hoping for. It will be an adjustment and definitely feels like a big step backward in many ways. But there are some perks. I no longer have to prep and thicken his bottles at night, so that will save me some time. Yay for that!

I expected there to be an adjustment period as we went back to using the feeding tube and remembering how to work the pump etc… and I assumed it would take a little bit to find a new groove. What I didn’t expect though is that Mattie would have such a hard time without his bottles.

Poor.kid.

He just cried and cried and cried. For like a whole day. It broke my heart. He just wanted to suck on his bottle and get his milk the way he’s used to. And I’m not gonna lie… I missed that routine as well. But per the norm with this kid… after that first day, he’s adapted pretty well and is taking it all in stride.