What type of situation led your child on having a G-Tube/Trachea placement?
October 5th, 2023 was the day my daughter had surgery for her G-Tube.
She failed the modified barium test a few days prior due to aspirating on thinner liquids. Because her condition with Rett-Syndrome, the muscular strength of dysphagia, is a major concern..
I still feel guilty, to this day, it had to come down to this. This, however, is ideal to help her be healthier and get stronger to overcome other obstacles she may still face, with her overall health. The whole week and a half of eating in front of her during our meals together while only she can get her supplement from G-Tube was one of many hardest moments to bare.
Last Monday, we had a short follow-up with GI and with speech tech to attempt pleasure foods; eat by mouth, again. Only acceptable food textures once are 4,5, and 6 from the IDDSI chart (International Dysphagia Diet Standardized Initiative). Once a day, we get to retry her favorite foods to help regain muscle strength of eating safely, without aspirating on them. Very self conscious.
Aspirating on liquids and solid foods is a silent killer of obstruction in an organ, such as esophagus and lungs, will lead to chronic scar tissues and sudden pneumonia. Already have had our share of hospital stays at children's that we basically know the layout at the back of our hands, now. It's been our way of life since we got her diagnosis. I wish I could make her genetic condition disappear forever, all for her to be a agilitive and happier child.
So, that's our story.
Good morning, just joined less than an hour ago and found out our babes are g tube twins