2 steps forward, 1 step back

As usual, Max decided he wasn't done surprising us and wanted to continue to be the center of attention. Last night was another troublesome night where Max took a small step back after a strong rally earlier in the day. The doctors think there may be an infection developing in his lungs that is preventing him from improving on the same course he has been on. Throughout today, they continuously were taking test samples and sending them to labs for analysis....at this point they DO NOT think he has an infection....that's good news, the bad news.....if there is no infection, they aren't quite sure why he isn't improving. Tests showed that his heart repair is holding and there is minimal leakage in the heart (as much as you and i have), so the actual surgery has proven successful...now it's chasing down everything else and getting him healthy enough to use that new ticker of his to it's full potential.
They continue to reduce his medications, eliminating another blood pressure medication, increasing his caloric intake via breastmilk and lipids, started him on Viagra (of course it's called something different when kids use it) to assist in the dialation of his blood vessels which will help reduce the need for the nitric oxide and hopefully get him off one of the machines. Once that happens, they can focus on getting his blood pressure medication down far enough to take him off the ventilator. They had hoped that this would be done today or tomorrow, but with him not cooperating, they now think Tuesday is the earliest. This keeps Max in the CICU until Friday at least.....we are still hopeful that by mid-week we can at least pick him up and hold him. One of the hardest things is to get jealous of the other parents here that are at least able to hold their kids while we are left only the ability to stroke Max's forehead and occassionally hold his hand....although he is now restrained because he keeps trying to pull out his breathing tube, so his hands aren't even accessible at this point :-(
Max enjoyed visitors this weekend and we are still hopeful that there will be an opportunity for Maya to visit later this week. The staff here continues to baffle us with their skills and ability to see into a crystal ball....despite the setbacks, they always seem to have multiple plans for multiple what-if scenarios. We are so happy we decided to come to Children's.
Thanks again for everything you have all done. We will update again tomorrow.