Results Part II (Hurry up and wait... again)
We have hit our "follow-up" window and met with Speech and GI this week. Tomorrow we should get a swallow study date, so let's recap what has happened in the past two months:
- Eating/ drinking went INCREDIBLY well after the gel fill!!!
- Three weeks ago, we got a little flu bug- puked once, then puked a week later from what I can only assume was a lactose intolerance (this is common in small kids and Caden had it last year after getting a virus). So we are on a lactose free diet right now and have yet to re-gain the eating/ drinking momentum that he had before, and even taking this into account, about 1.5 months after the fill the eating started slowing down. It sounds crazy that I can make that statement, but when I have a notebook that shows everything the kid eats/is offered/refuses- it is sort of hard to argue.
- GI confirmed again that they would like to do a scope on him. Being on reflux meds as long as he has, they want to see the extent of any acid damage and make sure that we aren't dealing with any other GI issues. With the little flu bug, he wanted nothing to do with anyone touching his belly- and still gets weird about people pushing or pressing on his stomach and considering my own extensive and odd history, I can concur that I would rather be safe than sorry in that department.
- Speech has nixed any clear fluids aside from his daily cup of juice to keep the poo flowing! So it is Pediasure or soy milk only to keep his calories and protein intake as high as possible. So no more water or diluted kool-aid for the little Goober.
- Luckily, Speech agreed that a swallow study should be re-done. If they didn't I was going to insist anyway, since that is the gateway to the ENT re-assessing for a permanent stitch. My big dilemma is if the study shows improvement: wouldn't they WANT to do surgery because that would show that the temporary fill worked so make it permanent before it wears off and we go backwards any further? If the study shows that he is going backwards then do the surgery because we saw how much of a difference the fill made when it was fully intact?? (remembering that the temporary fill is now disintegrating and that is why we are at a cross-roads at this point) This being a question for the ENT, obviously, but I just can't really wrap my head around why they 1. want ANOTHER swallow study and 2. WOULDN'T do the surgery at this point.
- So now we are waiting for a study date (of course the scheduling woman is out after 11am today), we will get a date, then schedule with the ENT after we get the results and see him and go off of the results and his recommendation. If he deems surgery "OK" then the surgery will need to be scheduled in coordination with a GI doctor so the scope can be done while Caden is out as well, which is what I wanted done at the last procedure. Add a two year old check-up to the pile, a birthday party, impending Thanksgiving and Christmas and you have one stressed out momma!! Not to mention that mentally preparing to send my two year old into his FOURTH surgery isn't exactly how I planned to spend my holidays, or my vacation time that I worked all year to save up.
Hurry Up & Wait... This is the story of my little Goober, he has always made his own path, and it has NEVER been the path that people expect him to take!!
- Eating/ drinking went INCREDIBLY well after the gel fill!!!
- Three weeks ago, we got a little flu bug- puked once, then puked a week later from what I can only assume was a lactose intolerance (this is common in small kids and Caden had it last year after getting a virus). So we are on a lactose free diet right now and have yet to re-gain the eating/ drinking momentum that he had before, and even taking this into account, about 1.5 months after the fill the eating started slowing down. It sounds crazy that I can make that statement, but when I have a notebook that shows everything the kid eats/is offered/refuses- it is sort of hard to argue.
- GI confirmed again that they would like to do a scope on him. Being on reflux meds as long as he has, they want to see the extent of any acid damage and make sure that we aren't dealing with any other GI issues. With the little flu bug, he wanted nothing to do with anyone touching his belly- and still gets weird about people pushing or pressing on his stomach and considering my own extensive and odd history, I can concur that I would rather be safe than sorry in that department.
- Speech has nixed any clear fluids aside from his daily cup of juice to keep the poo flowing! So it is Pediasure or soy milk only to keep his calories and protein intake as high as possible. So no more water or diluted kool-aid for the little Goober.
- Luckily, Speech agreed that a swallow study should be re-done. If they didn't I was going to insist anyway, since that is the gateway to the ENT re-assessing for a permanent stitch. My big dilemma is if the study shows improvement: wouldn't they WANT to do surgery because that would show that the temporary fill worked so make it permanent before it wears off and we go backwards any further? If the study shows that he is going backwards then do the surgery because we saw how much of a difference the fill made when it was fully intact?? (remembering that the temporary fill is now disintegrating and that is why we are at a cross-roads at this point) This being a question for the ENT, obviously, but I just can't really wrap my head around why they 1. want ANOTHER swallow study and 2. WOULDN'T do the surgery at this point.
- So now we are waiting for a study date (of course the scheduling woman is out after 11am today), we will get a date, then schedule with the ENT after we get the results and see him and go off of the results and his recommendation. If he deems surgery "OK" then the surgery will need to be scheduled in coordination with a GI doctor so the scope can be done while Caden is out as well, which is what I wanted done at the last procedure. Add a two year old check-up to the pile, a birthday party, impending Thanksgiving and Christmas and you have one stressed out momma!! Not to mention that mentally preparing to send my two year old into his FOURTH surgery isn't exactly how I planned to spend my holidays, or my vacation time that I worked all year to save up.
Hurry Up & Wait... This is the story of my little Goober, he has always made his own path, and it has NEVER been the path that people expect him to take!!
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