56 days ago:
Friday, September 23, 2011
The number of days we have spent in the hospital since we got to CO. Some days it feels like we have been here forever, but other times it's hard to believe how long it's really been. But I guess when your baby knows how to work the equipment, you know it's been too long! Despite the fact that we arrived with him having a low grade fever and diarrhea, and he will be leaving with similar symptoms, a LOT has happened in between. The biggest being his g-tube, which has made giving meds. and keeping up nutrition a lot easier. We have certainly had issues with it, but overall it was a good decision. Due to his EB, and his immune system is general, Raul has been getting sick again with infections every time his antibiotics are stopped. It seems like it will be a battle to keep him "healthy" and out of the hospital, but hopefully this round he will be out longer than a couple hours! Developmentally he has made great strides during this hospitalization, which is wonderful. He is such a smart boy! He will be followed closely outpatient, and will also receive outpatient OT/PT/Speech therapies.