May 1: First Outpatient Appointment

We saw Matthew’s Primary Care Physician today. We haven’t gone out with him other than bringing him home from the hospital because it’s just a lot with his oxygen tank and feeding pump, so this was our first big outing. And we survived 😮‍💨.

Matthew sees a Family Nurse Practitioner, who has a 26 year old son with Down Syndrome herself. She was really great with Matthew and gave us lots of good information. There are so many different people and moving parts to his care, though, that not only is it a bit overwhelming keeping it all straight…it’s difficult to get the answers we need when we need them.
Luckily we have a really great home health nurse who has been following up.

Today, a feeding/speech therapist came by the house as well and she was able to show me how to thicken Matthew’s milk so we can start doing some bottle feedings on top of the bolus feeding through the pump when he’s really hungry.