Caden had a MBS (Modified Barium Swallow) study done at MUSC on Friday afternoon. This was to test his swallowing functionality after the second botox treatment. This MBS showed no improved swallowing functionality relative tot he last MBS which was doe one week after th first botox treatment. While the recent botox treatment was a little bit larger of a dose, it appears from this MBS that Caden was just not trying to swallow as much today as he did during his last MBS. Caden did swallow fine when he tried, but for some reason he just did not got through the motions today as freely as he did on the last MBS.
We had a pretty lengthy conversation with the therapist at MUSC today. Sherry and I want to try using the MUSC therapists for a while for the feeding issues. They agreed that this might be a good move for the short term. This will require at least one more trip to MUSC per week for Caden. The big problem is that Caden’s case is so rare that no one can even find research on how to treat his swallowing condition. MUSC has one therapist who has been working feeding issues for about 20 years and she has only seen two other DiGeorge children with anywhere near the swallowing difficulties that Caden displays. They lost contact with other two patients and have no idea what happened with their swallowing issues.
We also discussed whether Caden is still at risk for aspiration based on the fact that he has completed two MBS studies with no signs of aspiration during the tests. The therapist believe that Caden is still at risk for aspiration in the event his secretions get to flowing faster than he can swallow given his limited swallowing capacity. For us this means that we still need to suction Caden when he starts to cough, gang, or show and signs of difficulty breathing. Sherry started to transition to a bulb suction technique this week to try and minimize the amount of trauma inflicted on Caden’s nasal passage to get his secretions cleared. Caden continues to need very little suctioning at night. I have not quite got used to Caden sleeping so well without needing suctioning. I find myself waking up and having to go check on Caden as much as several times per night even when he is doing fine.
Heart Update
Sherry made an appointment with Caden’s cardiologist. This is for us to sit down and get a clear understanding as to why they are not monitoring Caden’s heart a little closer given the severity of his outstanding heart defects and his rapid growth. The appointment is not scheduled until the week of the 26th. We will keep you posted on this subject a we get more information.
Caregivers
We have been blessed with some great help lately. Today one of my former co-workers watched Riley while we went to MUSC with Caden. She has also been helping Sherry with errands and has been generous with clothes from her little boy who is at least one size ahead of Caden at all times. Sherry has also worked out a deal with Emory’s Mom so that we can take turns watching each other’s children to allow for a date at least once per month per couple. These folks along with a new sitter to take care of both boys and one of my sister’s best friends has made life a little more bearable for Sherry this week.
Please keep us in your prayers. We have a lot to be thankful for and that is what you can pray for this week when praying for us. Just thank God and give him credit for our blessings.