When we were first allowed to see Max after surgery his heart rate was extremely high. It seemed like the whole CVICU was in his room (3 surgeons, 2 or 3 cardiologists, nurses, nurse practitioners). They couldn't figure out why his heart rate was so high and they were all discussing how to proceed. They explained to us that they were going to hook him up to a pacemaker and give him medicine that would momentarily stop his heart and then it would begin again in hopes to trip up his pace and send it back to normal. I'm sorry. You're going to do what!? Then Dr. Heinle (Max's surgeon) walked in and ripped off his surgery hat and
We moved to the 15th floor pretty quickly and Max recovered really well. Within 5 days we were getting discharged and Edgar and I were in disbelief. How did we just go through another heart surgery so quickly? We literally laid in bed that night, stared at the ceiling, and asked, "What just happened?" We were so thankful and we could only attribute everything to prayer.
I took Max to his pediatrician within a couple of days to have a post-op evaluation and I was told he looked great. The following week we went back to Texas Children's for his official post-op evaluation and chest x-ray. Edgar didn't even leave work for this appointment because we were so confident that Max was doing great. The nurse practitioner came in and asked in a very confused voice how Max was doing. I said he was great. Just look at him! He was smiling and talking, and trying to crawl right off the examination table. She agreed that he looked great, but then said that his x-ray showed a very different story. He had developed effusions or fluid around his lungs and needed to be hospitalized again. 5 more days of hospitalization with IV medicine and once again we were heading home. This time, exhausted.
We had two more follow-up appointments in the past weeks and it's hard to determine what exactly is going on. I think one of the difficulties I have is that we have different attending doctors that see us almost every time. Each time we have an appointment we have to deal with another opinion, another personality, another style. It's hard, as a parent, to decipher where we really stand. I think the one thing to focus on is that Max looks great. I love to tell people that he's had two heart surgeries. It's like a badge of honor. Your kid is walking at 6 months? That's cool. My son just had open heart surgery. It trumps everything! (I'm not that bad. Honest.) Our most recent appointment wasn't that great. The attending said that there are still a lot of questions surrounding Max's case. Why did he have such an irregular rhythm coming out of surgery? Why did he develop effusions? He also mentioned that it did not sound like his band was very tight. We asked how that would effect his lungs and he said that was a good question, but if Max is not struggling to breathe it should be ok. He said he's curious to see his next echo cardiogram. I wouldn't be surprised if we have to do another catheter. Again, maybe we're just dealing with an attending that has a different approach or style. It doesn't make it any easier. What does make it easy is seeing Max make new connections everyday. It's easy watching him play with cars and say, "vrooom." It's easy loving him. Easy.