Well, let me start by saying that Gwendolyn didn’t ace her swallow test earlier today… but she didn’t flunk out either.
The long and short of it is that she did okay and that we are back to the “wait and see” approach with an open-ended release date.
During the test, Gwen had a difficult time with regular liquids. According to the tech, she frequently aspirated or had fluid go down her airway as opposed to her stomach when consuming regular liquid. However, as they thickened the liquid, Gwen’s aspiration was less and less frequent. The thickest substance they tried was at the level of honey. In that test, Gwen only had a minor aspiration.
What does that mean you ask… well, it means that the occupational therapist is going to attempt feeding Gwen at that honey consistency out of a bottle in the short term. If she feels that Gwen is doing well, then it sounds like she will avoid a permanent feeding tube for now and be released. If she’s still having issues even when a thickening agent is added, then she’ll likely have a G feeding tube inserted before she is released.
Either way, she’ll have regular swallow study follow-ups to see how she is progressing with age. She should eventually grow out of her issues by age three. (fingers crossed)
Since we’ve had some back-and-forth on whether or not Gwen’s got reflux, they are also going to do a pH test on her. It obviously will test the acidity in her throat over a 24 hour time period and is the most accurate in diagnosing the condition. A high level means she’s refluxing stomach contents which could also be negatively affecting her ability to swallow. So, if they find she does have a case of reflux (which is rather common for babies), she’ll be placed on medication for it once and for all. That would be a welcomed change from the current yo-yo method of putting her on it and then taking her right back off. Unfortunately, that has happened a couple of times now.
So the long and short of it is that Gwen’s still at the hospital and will remain there for the near future until the occupational therapist decides if the thickened formula feedings are working or not.
Obviously, things could have gone worse today… Heather and I are hopeful that whatever is decided won’t take an extended period of time and that it is the right course of action for her. Given how well she’s breathing now, we’d love to have a solution as successful as the jaw extension was for her breathing difficulties.
That’s all for now…
The long and short of it is that she did okay and that we are back to the “wait and see” approach with an open-ended release date.
During the test, Gwen had a difficult time with regular liquids. According to the tech, she frequently aspirated or had fluid go down her airway as opposed to her stomach when consuming regular liquid. However, as they thickened the liquid, Gwen’s aspiration was less and less frequent. The thickest substance they tried was at the level of honey. In that test, Gwen only had a minor aspiration.
What does that mean you ask… well, it means that the occupational therapist is going to attempt feeding Gwen at that honey consistency out of a bottle in the short term. If she feels that Gwen is doing well, then it sounds like she will avoid a permanent feeding tube for now and be released. If she’s still having issues even when a thickening agent is added, then she’ll likely have a G feeding tube inserted before she is released.
Either way, she’ll have regular swallow study follow-ups to see how she is progressing with age. She should eventually grow out of her issues by age three. (fingers crossed)
Since we’ve had some back-and-forth on whether or not Gwen’s got reflux, they are also going to do a pH test on her. It obviously will test the acidity in her throat over a 24 hour time period and is the most accurate in diagnosing the condition. A high level means she’s refluxing stomach contents which could also be negatively affecting her ability to swallow. So, if they find she does have a case of reflux (which is rather common for babies), she’ll be placed on medication for it once and for all. That would be a welcomed change from the current yo-yo method of putting her on it and then taking her right back off. Unfortunately, that has happened a couple of times now.
So the long and short of it is that Gwen’s still at the hospital and will remain there for the near future until the occupational therapist decides if the thickened formula feedings are working or not.
Obviously, things could have gone worse today… Heather and I are hopeful that whatever is decided won’t take an extended period of time and that it is the right course of action for her. Given how well she’s breathing now, we’d love to have a solution as successful as the jaw extension was for her breathing difficulties.
That’s all for now…
Heather, I have been thinking about you lots. Hope to connect with you soon and your beautiful girls. Sending prayers for Gwen to come home very soon.
ReplyDeleteSteph