Monday's Update on Baby Graysen

Here are some pictures of Graysen at one day old. He is doing well. He is stable and rests a lot, but is active on occasion.

They have completed the diagnosis phase. The diagnosis is d-transposition of the great arteries with pulmonary stenosis and a large VSD. There is also an added complication that one of the pulmonary branches is not connected to the pulmonary artery. He is surviving because he is a on a drug called progestlandin. (I probably spelled the name of the drug wrong. That is how they have been pronouncing it.) The drug is doing three important things. It keeps the duct between the aorta and pulmonary open, the natural hole between the atria open, and the duct connecting the pulmonary branch to the pulmonary artery open. Usually these connections close at birth. They are forcing them open because it is the only way that Graysen can oxygenate his blood.

The next step is planning the surgery. The heart surgeon must finalize and approve all surgery plans and set the surgery schedule. He was out of town over the weekend and is in surgery all day today. The schedule is very busy right now. They had a lot of surgeries planned for this week and four newborns were admitted to the PCICU over the weekend, another of which has transposition also. Everyone is waiting for their date. The unit keeps all the babies stable and the surgery dates are set in order of priority. So, it is a waiting game. We are hoping for surgery by the end of the week. As of right now, we do not expect to hear from the surgeon today. Maybe we will hear something tomorrow.

The pediatric cardiologists are great and give us lots of information on his condition. They have an idea of what the surgeon will do, but ultimately it is up to him. Originally, they thought that he might approve a full fix of the heart at this stage. However, the cardiologist spoke to him early this morning and the surgeon is concerned about Graysen's birth weight. The cardiologist said that the surgeon may only do a partial fix at this stage, leaving the complete repair for later in the year. We will not know until the surgeon makes the decision. Ultimately, they will do what is in Graysen's best interest.

So, that is where we are at. There is some concern over his left leg, which may be an indication of a hip problem. He is going to have a hip ultrasound today and a physical therapist will look at his leg to determine what is wrong. We are hoping the diagnosis will just be physical therapy, but they have to rule out that something is not wrong with the hip joint. We should know the hip/leg diagnosis by tomorrow.

The funniest part of the day was when Lee and Mr. Slusher were visiting Graysen in the PCICU. They got to watch a doctor and medical student change Graysen's diaper. (Lee said that they felt obligated because they noticed a dirty diaper.) Well, neither had children and the diaper was put on backwards. Lee identified the backwards diaper, and stepped in. But, he was cautious because of all the lines in the belly. It was a good effort by all three, but ultimately the nurse ended up redoing the diaper. You will have to ask Lee for a more detailed story. It sounded pretty funny.