Bobby continues to do well at school, and this Mama had a nice long chat with his new occupational therapist. She was very enthusiastic about Bobby and his interactions in the class, and she's actually been the one working on oral feeding practice with him this week. She showed me a gait trainer they have at the school, and wants to try it with Bobby to help him practice walking. I am all about this OT today.
In other not so great news, we received a call from the surgery scheduler that Bobby's heart surgery date got bumped out to next Monday, 4/18. Apparently, there's another newborn baby girl that's having an emergency Norwood procedure. Our prayers go out to this family.
They are also concerned that since he has cold/upper respiratory symptoms, they may want to move the date out even further. They will re-assess when Bobby has his presurgery labs, xrays and physical with the APN (advanced practical nurse) this Friday.
Tonight, Mama A was playing with Bubs (rough-housing a bit), and she noticed that his lips started to look blue. We debated calling 911 or taking him to the emergency room, but we learned from his last admission a week ago, that they won't do anything more for him on an inpatient basis than help us kill time until the surgery date. So, yes, they know during periods of physical exertion, Bobby experiences a lack of oxygen in the blood, which can cause his lips or skin to turn bluish in color. It's terrible, and we particularly loathe this latest symptom of congestive heart failure. However, we know from his cardiologist that one of the reasons why they discharged him last week, was to avoid him becoming ill from the germs and iatrogenic conditions inherent in that setting, while we wait for the surgery date.
Still, nobody wants to see their child turn blue. Not even just a little bit.
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