Apparently Tommy and Rachel slept pretty good last night, but I kept going between Rachel’s bed and an impossible-to-sleep-in recliner. Tommy is on a hard-as-rock fold-out chair. Surely there is someway to make hospital furniture more comfortable! Especially in the peds area where they know parents will be sleeping. Whoever can come up with some comfortable hospital furniture is my hero!
Erica, I kept thinking of you last night having to spend so many nights here. 😦 I think maybe we should have taken your advice and begged to go home last night. They were still watching her leg since she was bleeding some, and Dr. Law said that was another good reason for us to stay the night even though he didn’t expect to have any problems with it.
Overall though, the rooms here are extremely nice. And the staff is incredible!
Okay, here’s my nursing/teacher side coming out. (If you want to skip the anatomy lesson, go to “two surgery options” below.) The way a normal heart functions there is a vein(superior vena cava) that drains blood from upper body to the right atrium of the heart (one of four chambers of the heart). And there is a vein (inferior vena cava) that drains blood from lower body to the right atrium. Unoxygenated blood goes from the right atrium to the right ventricle where it is pumped to the lungs, receives oxygen, and goes to the left atrium of the heart. Then to the left ventricle where it is pumped throughout the body through the aorta.
As Dr. Law said when he came by last night, Rachel’s anatomy is “uh…interesting”. She was born with holes between her atria (ASD) and holes between her ventricles (VSD). Instead of the veins from upper and lower body carrying unoxygenated blood to the right atrium, they both go to the left atrium. And the aorta comes off of the right ventricle instead of the left ventricle. Interestingly, Tommy and I were discussing last night that if she was not born with ASD and VSD, she would not have survived. Amazing how the body adapts in order to survive! Rachel was also born with patent ductus arteriosis (PDA) where the connection between the aorta and pulmonary artery that normally closes at birth remains open. I think this was another adaptation to help her survive. And, finally, she was born with pulmonary atrsesia where the pathway for blood to go from the heart to the lungs is blocked. Because of her adaptations, her heart pumped out mixed blood (oxygenated blood and unoxygenated blood mix together in her heart and are pumped to body).
In China she had a Glenn procedure. In this surgery, since her vein bringing blood from the upper body to heart was allowing unoxygenated blood to mix with oxygenated blood, they connect this vein (superior vena cava) directly to the pulmonary arteries going to her lungs on each side. Instead of being pumped to her lungs by her heart, the blood bypasses her heart going directly to the lungs through gravity and pressure.
This surgery greatly improved her oxygen levels. When she was found abandoned at age three, her hands, feet, and mouth were blue from lack of oxygen. Right now, her hands and feet are pink most of the time except for occasionally if she gets cold; then they look slightly dusky. She runs and plays most of the time like a normal kid only occasionally getting out of breath climbing stairs or running a lot.
The reason that they need to perform another surgery is because the vein coming from the lower part of her body is still carrying unoxygenated blood to her heart where it mixes with the oxygenated blood before being pumped to her body. So her blood only has 80-85% of the oxygen a normal person has. Dr. Law said that as she grows this would limit her more.
Two surgery options:
Normally, after the Glenn procedure, the next step is called the Fontan where they do the same thing for the lower body that they did for the upper body. They attach the inferior vena cava directly to the pulmonary arteries going to either lung, so that it by-passes the heart. The heart only acts to receive oxygenated blood from the lungs and to pump this blood to the body. Her two ventricles that have a large hole connecting them act as a single ventricle. I’m totally amazed that they can re-route the heart like this!
Second option sounds way more complicated to me. They basically make her heart function the way it’s supposed to. To do this they close the hole between her ventricles (which Dr. Johnson showed us on ultrasound on our first visit back in January–it’s a pretty big hole!). They also detach her aorta from the right ventricle and attach it to the left ventricle where it’s supposed to be. They undo the Glenn she had done, detaching the upper body vein from the pulmonary arteries and redirecting it to flow into the right atrium of the heart. Then they detach the lower body vein from the left atrium of the heart and reattach it to the right atrium where it belongs.Dr. Law said that of course there are risks with each step of this surgery.
The doctors are supposed to meet within the next month to discuss her case. Then they will let us know which option they think is best.
Rachel is now awake and has had breakfast. Our sweet nurse Ms. Roz has already been in to take off all of her cords, bandages, ivs, etc. Rachel is thrilled to be able to move around. We are all ready to go home. Just waiting on the nurse practitioner from the cardiologists office to come by and give discharge orders. And she’s impatiently waiting for me to finish and go play.