I'm feeling a little bit weary today. For some reason, after months of living with it, I decided to do a bit of research on the Internet about Fineigh's swallowing dysfunction. I've learned some new words that I feel I should have been taught by the health care professionals following Finleigh. (Ah, to be fair, they may well have told me and I just didn't ingest the words. Sometimes it takes me a while to learn new words, names, etc. And not like knowing the words would really change anything, I guess.) Perhaps they have nothing to do with her. Anyhow...here are a couple new words to increase your vocabulary.
Dysphagia (dis-FAY-juh) - The medical term for the symptom of difficulty in swallowing.
A good explanation of it is here. An excerpt follows...
Swallowing disorders (a term I HAVE heard), also called dysphagia (dis-FAY-juh), can occur at different stages in the swallowing process:
Oral phase–sucking, chewing, and moving food or liquid into the throat
Pharyngeal phase–starting the swallow, squeezing food down the throat, and closing off the airway to prevent food or liquid from entering the airway (aspiration) or to prevent choking
Esophageal phase–relaxing and tightening the openings at the top and bottom of the feeding tube in the throat (esophagus) and squeezing food through the esophagus into the stomach
* Finleigh's condition is in orange. Forgive me for self diagnosing on the Internet, but this is not information I did not know, per se. I just finally have an explanation...sort of.
As a result, children may be at risk for:
- dehydration or poor nutrition
- aspiration (food or liquid entering the airway) or penetration
- pneumonia or repeated upper respiratory infections that can lead to chronic lung disease
- embarrassment or isolation in social situations involving eating
Luckily, things were caught before she did get a chronic lung disease - just a few cases of pneumonia - and for that reason I'm thankful for the tube feeding. And she's too young for embarrassment yet. And she always seemed to get enough food. But I am weary of not knowing if there is an underlying condition, wondering how, when and IF this will be fixed and frankly, inserting that tube into my poor daughter's nose. I know I have a lot to be grateful for and I don't mean to sound whiny. I don't, really. Just had to get my thoughts down on "paper" and share them with someone.
There are many children much worse off than Finny. Children who have life threatening conditions and all that kind of stuff. Perhaps that's why Finleigh's been kinda overlooked. I feel a little guilty that I haven't been a better advocate for her. I've just waited around to hear things. I'm realizing that I need to be much more assertive. I need to be following up with doctor's offices. Asking for things more strongly. Questioning decisions made. But I don't know anything. I'm just a simple mom lost in an underfunded and understaffed health care system.
Anyways, countdown to the MRI is on. T minus 12 days. Now, when and how we get the results to this LONG awaited test remains to be seen.