Doctor Appointments

Graysen is worn out after a long day of doctor appointments. This morning he had chest x-rays done. The x-rays showed that his lungs look great. Caleb enjoyed going to see the x-rays done. He got to see a lot of "x's." Caleb loves the letters of the alphabet and x is one of his favorite letters. (His other favorite letters include b, s, and o.) So, he was very excited to point out all of the "x's" during the visit.

This afternoon Graysen visited the pediatric cardiologist. The PC said that Graysen looks great and is doing very well. Graysen weighed 9 pounds even today. He is growing at an amazing rate and loves to eat!

The PC said to expect to have the second surgery in August or September. Graysen's heart cath is scheduled for July 29th. The PC said that things happen fairly quickly after the heart cath. The purpose of the heart cath is to look at areas of concern to determine when the next surgery is needed and to prepare a plan. In Graysen's case, the two areas of concern are the artificial shunt that he has in place and the connection between the pulmonary artery and the branch that goes to the left lung. The PC does not think that they will want to push the surgery into the winter months when there is a higher chance of illness. Ultimately, MUSC will make the final decision, but the PC told me this so that we can start planning. I got the impression that we will not get a lot of notice before the next surgery.

Graysen's next surgery will be the Rastelli procedure. This will be the surgery that does all of the repair work to the heart. The surgeon will close up the VSD (hole between the two ventricles) in a way that forces blood to flow from the left ventricle to the right ventricle and into the aorta. (Usually, the aorta is attached to the left ventricle, but in Graysen's case it is attached to the right ventricle. They will leave it attached to the right ventricle for the rest of his life, but it will be in a way that becomes like the left ventricle.) At the same time, he will install a homograph (donated cadaver tissue) that directs blood from what is remaining of the right ventricle (the part sectioned off from the chamber attached to the aorta) to the pulmonary artery which is not attached to Graysen's heart. (Usually the pulmonary artery is attached to the right ventricle, but Graysen's is closed and does not have a connection to the heart. Right now his shunt is connecting it to the right ventricle of the heart which is also connected to the aorta. So, as Graysen's heart stands, both the aorta and pulmonary are getting blood from the right ventricle and all of the blood is mixing.)

The bottom line is that Graysen's heart is a pluming mess and needs to be re-plumbed with conduits to get blood to where it is supposed to be.

The good news is that this is the last expected surgery for a while. His next one will be when he is 5 - 10 years old. I am looking forward to next year which will be more normal.

I feel very blessed that Graysen has done so well. It is truly amazing how resilient he is and that we are home enjoying our life with him.