Happy Day

Today is a great day not only are Luke and Molly coming to visit, but Max is getting discharged!

Our mighty max has truly been mighty. He was extubated successfully on Monday night. It took Max five hours to wake up from his Fentanyl and Morphine sedation drips but once he woke up everything moved quickly. After extubation they moved Max to high flow 8L/min of oxygen. Over night they slowly kept decreasing the oxygen levels and all the while his oxygen saturations stayed between 98-100.  By 1Pm the next day he was all the way off the oxygen. After carting around portable oxygen over the last two and half weeks and always having a nasal cannula on Max's face, it is so nice to see our baby again!

The whole waking up from anesthesia wasn't totally a walk in the park. Tuesday morning we walked into the CVICU to find Max very agitated. I quickly realized something was not right with Max's eyes. For my optometry colleagues, Max had a 70 prism diopter constant right esotropia (crossed eyes) and the right eye was not tracking at all. His nurse that morning was a little inexperienced and this mama was freaking out. I asked a lot of questions for my mind quickly went to this is NOT NORMAL and what neurological event happened during his surgery/recovery to cause this. A few hours later the doctors rounded on Max and assured me that this a very common presentation after being on such heavy sedation meds for a prolonged period of time. Throughout the day the esotropia became less pronounced and Max's eyes started working together as a team. Yesterday even when Max got upset I saw no evidence of an eye turn. Praise God!

Max was supposed to be transferred to a step down unit on Tuesday, but there were no open beds. Yesterday they told us that Max would be transferred first thing in the morning and once again no open beds. So it looks like Max is just going to be discharged directly from the CVICU. He had a pretty good day yesterday with all things considered. I spent all day in the CVICU holding Max, loving Max, feeding Max and trying to get Max to sleep. The kid was wired and with all the excitement of the CVICU he slept maybe 45 minutes total all day. We are hoping he had a restful night, but even if he didn't he will be out of that place in just a few hours.

This CVICU/recovery stay has been a complete 180 from our last stay. Max has a made a record turn around and will only have stayed 7 days in the hospital (6 days post chest closure) after open heart surgery! We were told expect the recovery to be two to four weeks. Brad and I are both shocked but what do you except from such a strong little boy. Max's new bi-ventricular heart has already made such a difference. His coloring is amazing and so pink and healthy! His breathing is normal and no more chest retractions. He takes a bottle two to three times as fast as he used to without taking breaks to breathe. It's like we have a new baby. We still have only seem glimpses of smiley/giggly Max but he is slowly coming back. I am sure it will help to be out of the hospital with his brother, sister, and Toto (grandma). After talking to his attending in the CVICU yesterday, we have decided to spend a few extra nights at the Ronald McDonald house before taking Max home to Orange County. We want to make sure he is completely stable before making the drive. I think the last discharge and subsequent emergency room visit has me a little nervous.

This whole experience has been a whirlwind. There has been a lot of stress over the last couple of months, but we are hopeful that things will continue moving in the right direction. We were told yesterday than on Max's last ECHO the valve under his aorta is a little leaky. This is very common after open heart surgery and is something they will watch. Max will continue to be followed closely by Dr. Doshi and CHOC and hopefully no further surgical intervention will be necessary. I told some of our favorite doctors and nurses at Stanford that we love them but we hope to not see them again anytime soon!

Thanks everyone for your continues support and prayers. Our family has been through a lot but seeing Max come out the other side of this truly is the biggest miracle! MAXIMUS! MAXIMUS! MAXIMUS!!!!