So today was one of those down days that we talked about during the good times the last couple of days.
Riley had her swallowing tests today and unfortunately it was found that she had the potential to aspirate with any of the bottle feedings. This means that the food can come back up into her lungs. So this is obviously a bad thing. She this means she is having serious issues with her swallowing which could be from the palatal problems or muscle issues that come with 22q.
So even though her reflux has been doing well, she still has the chance to sufficate. So right now, they will be pushing the feeding tube down from where it is now to right below the stomach into her upper intestine. They are also upping her calories so she can start to grow a little more as the diretic has had her lose an ounce.This tube movement and calorie uptick will stop her issues for now, but we need to have the GI doctor come in on Monday and check her out so we can have a path going forward. Most likely our little one will need to have surgery to have a feeding tube placed into her stomach/intestine so that we can feed her at home, so she can grow, so she can have heart surgery.
Beyond that we don't know what would happen. The GI doc should tell us whether they think this would fix itself as she grows (unlikely according to our current docs) or whether this swallow issue would need to be fixed by surgery when she gets older. This is bringing up very serious issues as we don't know if a daycare would accept a little baby with a feeding tube and due to economic situations Michele needs to work. This is a set back, but considering all the good news yesterday we consider ourselves about even (obviously if the daycare thing gets worked out). Heart surgery and swallowing issues in the bad column, but renal, hearing, immunity, calcium processing, no skeletal defects in the good column.
Thank you again for all of the notes of support and love - they truly are helping us get through.
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