They That Wait on The Lord (click link)
When Evan was in the NICU one of my friends told me “it’s not about the setbacks it is about the comebacks!” I was reminded of this when he had to go back onto the nitric oxide. The pulmonary hypertension is very common in people with Trisomy 21 and the doctor was confident that it was something that could be treated and managed and I know with God that everything is possible. Today, they are slowly weaning him off of the nitric oxide and will put him on an oral medication that will increase the nitric oxide in his blood. Once the nitric is off hey will start bring the flow of oxygen down. In a couple months they will do a procedure that will measure the pressures in his lungs.
We also learned that Evan tested positive for chylolorax (chylo for short). There is a lymph Node very close to the surgical site and it can sometimes get nicked. It basically causes fluid (chile) to build up in the cavity around his lung. Chile is a normal fluid the body creates when it digests fat. This was suspected because the drainage out of his drainage tube turned milky after he started to eat formula again. He has been NPO for several days since he went on CPAP and will stay that way until they are able to wean him off of the high flow oxygen and then he can have a low fat formula called portugen ( skim formula). He is getting nutrition (TPNs and lipids) through an IV so he doesn’t feel too hungry. He has several different types of Chapstick and loves when I put it on him. He tries to eat it..lol! He also enjoys a little sweet ease (sugar water) on his Bink which he makes me hold! Anything for my baby.
I spoke to the doctor today and clinically Evan is doing great. He gave me my first smile since Thursday. He has been smiling at daddy but not me . I think he was a little upset with me. He can’t quite figure out why I’m not picking him up. This morning when it walked in he gave me a huge grin!