Day after Surgery

Burke's surgery went well. It was a long day and took about 6 hours from start to finish. Both Dr. Kouretas and Dr. Hawkins were in the operating room working on Burke's heart. They did a lot of patch work on his pulmonary artery. They went out the the branches as far as they could. They also put in a 10 mm sized gortex shunt from his right ventricle to his pulmonary artery. We have a piece of what they used and it is huge. That will help hopefully help his artery to grow. The branches of his artery that go to both lungs are very small still so his saturation levels are still pretty low because they can't expand automatically to get more blood to his lungs. Dr. Hawkins said it could take months for his sats to increase because it will take time for the branches of his pulmonary artery to grow. Now, we are learning there is a chance that those arteries won't grow. We asked a doctor today what would happen if his arteries for some weird reason just won't grow. He said that his life expectancy would be shortened and it would basically be a slow gradual decline in his health. It is good to know that information so we know what to expect, but we are not thinking about that too much. Time will tell, and we are very hopeful that because of the increased size in shunt that it will cause more blood to go through those arteries and cause growth in the branches. We are very hopeful.


Well, it is now the day after surgery and Burke is now stable and doing fine. Last night was rough though. His oxygen levels were low all night and they were pretty worried about him throughout the night. They finally ended up giving him Nitric Acid, a gas, to help relax his pulmonary bed in his lungs so that oxygen will flow more freely and get his oxygen levels higher. This morning his sats were in the high 70's where in the night time they dipped into the low 50's.



He is much more stable today than yesterday. He is on a lot of medications to keep him stable and he was on a paralytic to keep him from moving and possibly pulling out his breathing tube. This morning they have weened him off of the paralytic but they have found that as he begins to wake up more, his Sats drop and his blood pressure goes up. As a result they have given him versed (sp?) to help keep him sleepy without giving him the paralytic. I was just in with him when he was starting to wake up more than he has, and he was moving more than they wanted him to. They quickly gave him versed again, and he is back asleep and content. He almost pulled his breathing tube out. He was very fidgety and did not want to be held down. When he would fight us to move, his oxygen levels decreased and so it told them that he is not quite ready to be awake today. They also ordered restraints, so he has his arms tied to the bed right now. It is so sad, because Burke does not like to be held down in any way.



He does have a breathing tube like I just said, and they are giving him oxygen through the tube. He is gradually being weened off the oxygen so that he can breathe more on his own. They should be able to take out the breathing tube in a few days or so, but it might take some time. This morning they also put in a feeding tube (through his nose) so they can get some food to him. They want it to go directly into his intestines, but they just reviewed the x-ray they did after putting in the tube and it looks like the tube is in his stomach. They are trying to manipulate the tube to have it go to the proper place. I do not know why they want to by-pass his stomach, but obviously it is necessary right now.



He has many tubes in his body right now, and I wish I had a picture of him, but I have not taken one yet. He surprisingly looks very good for what he has been through. He appears to be swollen (which is expected) but not as swollen as I thought he would be. He has a catheter in his little pee pee, and his urine output is very good, so that means his kidneys are working properly because his heart is working well. He has three chest tubes. One, that is draining blood from the sac around his heart. The other two tubes are draining fluid from the sacs around his lungs. Last night he was bleeding a lot through the tube in the middle coming from the sac around his heart. They were pretty concerned with that and wanted to monitor it though the night. His bleeding is now under control so they will not have to open him back up again.



We are hanging in there and doing well. A little sleep deprived, but we are good considering what out child has undergone. Burke is doing well, and we are hopeful of a good recovery. We will post a picture sometime this afternoon. We love you all and are so grateful for all your love and support and prayers in Burke's behalf. He is being watched over and we are grateful for his progress and for what the doctors have done and are doing to keep him stable and comfortable.