After a very long night, we can't even describe what it was like to see our son this morning. Nothing can prepare you for seeing your baby on this much support. This is the stage where infants with CDH are the sickest - after repair. Jordan did very well with the first surgery last night. He is having issues with the second.
Jordan now has a V.A.C. patch, or vacuum assisted closure over his stomach. This allows more room the organs to rest without putting so much pressure on his kidneys. The patch looks like an air filter or sponge that was laid in the incision. They then apply negative pressure, or a vacuum affect, to the wound. This allows even air flow across the covered organ, which is his liver, so that it can set partially outside of his body without causing necrosis - or death of the tissue. The goal is that Jordan's stomach can heal and reduce the swelling - allowing the liver and intestines to settle in over time.
What a parent won't do for their child.... So many people are offering prayers and words of encouragement for our son and family. We need Jordan to pee. Last night, Jordan's kidneys stopped working. This is a result of both the trauma of surgery and the pressure of the stomach contents. Urine is excreted by the kidneys. We need them to heal so that Jordan can get rid of the extra fluids in his body.
One way that the team is helping Jordan is by giving him blood. This will allow his vessels to expand and carry fluids more efficiently throughout his vascular system. Right now, they are constricted because of all the trauma.
Another issue is that the ECMO circuit tested positive for an infection last night. It will take a while for the culture to tell us what kind of infection. Of course, the hope is that they do not see an infection with everything else going on. He is on general antibiotics now to see if they can heal the infection.
Now that we have experienced post-op, it is much easier to understand why they do not try this surgery after birth anymore. It would be way too much trauma for the newborn to handle. A newborn already has to struggle with a new environment as it is. This would be so overwhelming - it is overwhelming even though he had a chance to stabilize first.
God thank you for such a precious little boy. He was beautifully and wonderfully made. Mommy and Daddy are hanging in there and remain hopeful. And yes, we are praying for our son to pee...