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Our Family

Day 40: March 26th

I stopped by to visit this afternoon, and they have his CPAP down to 6 and doing great! The Neuro-Development team stopped by to observe him during his care time this morning. They were pleased with how he responded to cares and would move his hands up by his face. They’ve put in an order to start physical & occupational therapy to get his arms and feet straightened out and work on normal developmental cues and responses. They had started this before we were transferred over, although they hadn’t made it past the positive touch phase in PT, as he would get really agitated by anyone touching him. Hopefully we’ll make some good progress now that he’s not in pain from the hydrocephalus. 

Neurosurgery has stopped by every morning and are still pleased with how everything looks. His scalp has had a decent sized pocket of fluid the last few days, although the nurses believe part of it is due to the way the CPAP mask is containing it. They massage his head and wiggle his shunt around every 2 hours to help keep things absorbing. 

They’ve also decided to pull his feeding tube back into his stomach from his small intestine, and see if he starts handling feeds better without any spit up. I’m excited by all of the new updates and feel optimistic about how he’s moving forward!