After today, I don't even know where to begin. I apologize in advance because there are going to be mistakes in this post. I don't seem to be able to remember my name, much less how to spell all of the medical terms that we have learned.
This morning, Phil came back to Ann Arbor from home and met me a little after 6:00 am. We wanted a chance to hold and snuggle Caleb before his surgery. The surgery people were supposed to meet with us at 6:30 am, but they didn't make it until about 7:30. We didn't complain about the additional time with him! Caleb was hungry and mad when we got there, but as soon as we held him, he snuggled in and fell asleep. We met with the surgeon and he explained what they were going to do. The plan had changed a little because of what they had seen on the echocardiogram on Tuesday.
At about 8:15, they took him off to surgery. The surgery required stopping his heart and putting him on the heart/lung bypass machine. I am going to try to explain what they did for the surgery, but it is kind of tricky. In a normal heart, the blood flows into the right atrium, through the tricuspid valve to the right ventricle, then out the pulmonary artery into the lungs. It comes back from the lungs into the left atrium, flows through the bicuspid valve into the left ventricle and out through the aorta into the body. In Caleb, there are pieces missing, holes and stuff in the wrong spot. He is missing a tricuspid valve, so blood comes into his right atrium, goes through a hole in the wall between the right and left atrium, goes through the bicuspid valve and into his left ventricle. His left ventricle is the right size and working properly. From the left ventricle, blood flows into his pulmonary artery (located in the wrong spot) and through the hole between the left and right ventricle (the hole that shouldn't be there, but is beneficial in his case). When the blood gets to his tiny, useless right ventricle, it can exit through his aorta (also located in the wrong spot). The surgeon combined his pulmonary artery and his aorta to send the blood from the left ventricle off to his body. He also increased the hole between his left and right ventricles to make sure this pathway does not grow closed as he gets older. Because there is now no outlet from his heart to his lungs, he placed a shunt (a little Goretex tube) to take some blood from the aorta to send to the lungs for oxygenation. This is not exactly what they had planned, but they weren't able to determine exactly where his aorta and pulmonary artery were until he was born.
The surgery went well and the surgeon came up to talk to us around 1:30 pm. He said that the repair looked good, there was some bleeding and they did not close his chest to allow for swelling. He said that we should be able to get in to see Caleb around 2:30 pm. Phil and I went for a walk to get out of the waiting room and came back at 2:30.
The PCTU staff told us that they weren't ready yet and that they would need another hour or so. Around 3:45, they finally came and got us. When we got to Caleb's bed, there were about eight to ten nurses, doctors, cardiologists and respiratory people around his bed. We were told that Caleb was not stabilizing well and they were quite worried about his oxygen levels. They wanted his PO2 levels to be a minimum of 30 and Caleb's would not budge above 25. His blood pressure was not as strong and steady as they wanted it either. He was a funky purple/blue color.
They tried cooling him to reduce his oxygen demand, but that did not work. They tried giving him some heavy narcotics to slow him down further, but that did not work. They gave him some more drugs to paralyze him, but that didn't work either. There were a few more options to try, but one of them was operating again to change the repair and one was putting him back on the heart/lung bypass. After about 45 minutes of watching and getting more and more terrified, Phil and I headed to the Chapel for a little breakdown and lots of praying and crying.
We fortified ourselves with Coke and Sun Chips and headed back to the PCTU. When we got back, he had been moved to a larger area in the event the more drastic procedures were required. They had tried their last non-invasive effort - adding nitric oxide to the ventilator oxygen - and it was starting to work. His blood pressure was stabilizing with some drugs and some of his oxygen levels were coming up slightly. They did a test on his blood gas levels and his PO2 level had come up to 32. Phil and I must have looked like idiots with the huge smiles we had on our faces! We stayed around until about 8:00 pm to get his next results which had a PO2 level of 33. The doctor in charge said that they would be happy with that and that they felt that we could now take a wait and see approach to watch the numbers and make sure they continued up.
When we left, Caleb was hooked up to 10 different drugs and liquids, the ventilator and the nitric oxide. He is really gross looking, full of tubes, leads, and his chest is bloody and covered with something that looks like Saran Wrap, but he still looks beautiful to us and at least he has hopefully turned the corner. I just called the nurse at 11:30 pm and she said that we are still making gains and things are still looking good.
You will never know how much your prayers helped us today. We knew that when we got to the point where all we could come up with was "Help us", everyone else was picking up our slack. THANK YOU SO VERY, VERY MUCH!!!
If you have made it to this point in this post, you deserve a reward. Here is what we hope to see again in a another couple of weeks: