A couple weeks ago, Lydia had a swallow study done. This is something that has been talked about since our very first appointment we had for Lydia when we became concerned about her development. Lydia’s reflux is just relentless. She is on medication and we do a lot at home to try and help her with it, but we just can’t get it under control. This has easily been Lydia’s problem she has had the longest. Eating has been an issue from the very beginning for her.
Last autumn Lydia had a feeding evaluation and afterwards they decided to have a swallow study done to make sure Lydia isn’t silently aspirating. We finally had it a couple weeks ago. In case anyone else doesn’t know (I have learned so much with Lydia), aspirating is when food or liquid goes down your airway into your lungs.
To do the swallow study, they took Lydia back into a large room with a large x-ray machine. We had to figure out the best seating situation for her and ultimately decided to keep her in her wheelchair and x-ray her from there. They had me bring food and drink for her. I gave her one sip of her drink and they immediately said she had aspirated.
My heart sunk. It sunk because it’s one more thing that Lydia has to go through. One more thing that she couldn’t tell me so I could help her. Some days I hate Rett more than others. And this was one of those days. My heart hurts for how long this has been going on for Lydia and how uncomfortable she has felt.
Tender mercies: Lydia has never had pneumonia. Pneumonia is serious for anyone but for Lydia it can be very life threatening. I don’t know how she hasn’t had it if she has been aspirating every time she drinks but I am so grateful. And even though it took a long time, we know now. And that is a blessing.
The solution to help her is relatively simple. We tried a couple different things and found that she would not aspirate as long as her drink and food was at a certain consistency. So we got sent home with some thickening packets. We had to test each of her food and drink to see if it needed to be thickened. We’ve learned a lot and Lydia does seem to be drinking a lot better. So for now, she can continue to eat her pureed food and formula (but thickened) orally – yay!
We’ve also been working with her gastrointestinal doctor to see what else we can do to help with her reflux – on top of thickening her food. She is adding another medication to try and help. If we don’t see improvement in a month, they want to be a lot more aggressive with finding solutions for her.
Lydia never ceases to amaze me with her resilient spirit. She is so strong and patient with all that she has to go through. She is truly my hero.
Lydia teaches us all a lot. I’m grateful that thickening her milk and food helps her. Would hate for Lydia to not be able to eat or drink by mouth.
The goal is definitely to maintain eating some food and drink by mouth. She’s got this!