May 12

The importance of addressing Maxwell's PDA has come to the fore. We were told that his steadily increasing CO2 levels are caused by the heart defect. It is quickly becoming the primary obstruction to his recovery. We were told that there are three ways to address it:

1. Continue to wait for it to resolve on its own. this option would require that we switch from CPAP to intubation (!!).
2. Treat it with a drug that could spur his body to close the hole.
3. Repair it surgically.

#2 is ruled out because the main side effect of the drug is bleeding. With his low platelet count, that's a risk we can't take. #1 is ruled out because if his condition worsens, he may not be strong enough for surgery. Therefore made the decision today to treat Maxwell's PDA with surgical intervention.

Earlier today his heart surgery was scheduled for Wednesday morning. It will be a PDA ligation to repair the patent ductus arteriosus defect.

He'll be taken off of his feeding tube and transferred back to TPN (intravenous nutrition) until after the surgery. This is to prevent aspirating his stomach contents in case he throws up while he's under general anesthetic. We've been told that we can expect Max to get worse over the couple of days immediately after the surgery. This will happen as a reaction to the trauma of major surgery. Unfortunately, not having the surgery entails even more risk since the PDA is currently causing pulmonary deterioration.

Great news! (and we can always use some nowadays). Max finally had an eye exam and there is no sign of CMV Retinitis! This condition which causes blindness is a common side effect of the CMV infection that is the root cause of all of Max's problems.