I feel terrible eating in front of him because I know he wants to eat by mouth if he could. He hasn't eaten anything by mouth in a few days now. Even though he passed his swallow study with flying colors. Swallow study and real life are very different. During the swallow study different consistencies of liquid were put into his mouth using a syringe, in very small amounts (teaspoons at a time). He didn't have to chew, or work the food to the back of his throat with his tongue, all he had to do was "gulp" and swallow. If we give him food in real life it is so much work for him to coordinate all of his muscles to push the food back, gulp and swallow that he ends up crying hysterically after only a few spoonfuls. Imagine having to focus and try so hard just to swallow some yogurt. It's terrible.
He's tolerating his "belly meals" very well, and it sure makes giving him his meds easier because they just go into the tube too. We'll check in a few days to see if he's gained any weight.
Good news is that Cigna approved us for the 40 hours of nursing a week (until the end of the year). Chris is going to be staying home with Oliver when school starts because his district is being amazing with him taking leave and Cigna requires a caregiver to be home with the nurse so one of us needed to be home. After all the tragedies we've been through in 2012 between losing Miles in January and Oliver's diagnosis in April, I have no sick days left and unfortunately my district doesn't have a "sick bank" for me to tap into. We simply can't afford to care for Oliver long term if I don't go back to work. It breaks my heart.
Here is Oliver a few days ago with his new gtube. In 2-3 months in will replaced with a more permanent McKey button like the second photo.
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