Harlie's swallow study was yesterday at St. Mary's. Overall, it went well, I think. It was awful to torture her like that - she did NOT like it at all! But, I think we got some good information that will help us work on her feeding trials.
She had a modified barium swallow study. They put barium in various foods (to try different textures) and then she sat in a chair that made her eye level with us standing in front of her. The scary thing for her was that she was in a small space with the x-ray machine behind her and on both sides and open in front of her so her speech therapist could feed her. As Beth fed her, the radiologist would turn on the x-ray machine so we could see the barium go in her mouth and down her throat. I wanted to take a picture of the monitor because you could see all the pins and screws in her jaw from her jaw reconstruction surgery. But I didn't get my camera in time and the staff was a little weird about me taking pictures.
Anyway, Harlie normally likes the feeding trials okay. She doesn't cry during the sessions and she is a willing participant. But during this study, she cried the whole time. Which did not help, but there was nothing we could do about it.
Basically, she did "swallow", about 6 times I think. But her swallow reflex is very delayed. I guess the thickened liquid goes down a ways until finally a swallow kicks in. What that basically means is that her muscles are all very weak (which we knew) and she is at risk for aspiration. But, the good news is that she didn't aspirate during the study. And considering she was crying the whole time, I think that's even better news. We also learned that she can only swallow thickened liquids (you thicken the liquid with a tasteless thickening agent) and definitely not pureed foods, like baby food. The problem with the baby food is that her tongue cannot get the food to the back of her mouth and with her delayed swallowing, it just doesn't work.
So, we will continue to do what we have been doing with our trials, continuing to watch her closely for signs of aspiration. Hopefully, we will make some progress in the next year. But this will definitely take some time. She'll have the feeding tube for a while I'm sure.
Well, that's about it for that. Today we have an appointment with a local ENT so she can get another ear tube here in Richmond.
Take care,
Christy
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1 comment:
I can understand what Harlie is going through. I went through the same thing when I had a stroke 3 1/2 years ago and I had to relearn how to eat. It was a pain in the butt and it took 8 dilitations and many mbs studies but it was finally successful. I was able to eat solid foods after about 9 months but could only get to the pudding stage with liquids.
After a recent stay in the hospital for other problems my doctor was checking my esophagus and did another dilitation. I had another mbs study and was surprised to find out that my swallowing had finally come back to normal and after 3 years I was finally able to drink water instead of just sucking on ice.
I hope Harlie is eventually able to regain her eating capabilities. She seemed like such a feisty little girl when I met her at Amanda and Brad's wedding. I wish her well.
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