Monday, March 13, 2006

Drew's problems

After Drew was born and had his initial assessment and x-rays, it became obvious that things were worse than they appeared on all of the U/S.

His heart is not smushed up against the right side of the chest wall like it looked on the U/S. It's more in the middle of the chest, not in a horrible place. They have yet to find anything structurally wrong with his heart aside from the valves not closing, as they do in normal children, after birth. These open valves are the main contributors to his pulmonary hypertension.

He has fairly serious pulmonary hypertension which is why he's on ECMO. Pulmonary hypertension is (from here):
In the womb, the pathway of your baby's blood circulation is different than it is after birth.

In the uterus, a baby's circulation bypasses the lungs. The lungs are not needed to exchange oxygen because the placenta (the organ that nourishes and protects your developing baby) supplies the baby with oxygen through the umbilical cord. The pulmonary artery - which, after birth, will carry blood from the heart to the lungs - instead sends blood directly back to the heart through a fetal blood vessel called the ductus arteriosus.

Normally, when a baby is born and begins to breathe air, his circulatory system quickly adapts to the outside world. The pressure in the lungs changes as air enters and inflates the lungs. As a result, the ductus arteriosus, which previously supplied the fetal heart with blood, permanently closes. Blood returning to the heart from the body can now be pumped into the lungs, where oxygen and carbon dioxide are exchanged. The blood is then returned to the heart and pumped back out to the body in an oxygen-rich state.

In a baby with PPHN, however, the fetal circulatory system doesn't "switch over." The ductus arteriosus remains open, and the baby's blood flow continues to bypass the lungs. Even though the baby is breathing, oxygen in the breathed air will not reach the bloodstream. Because the blood returning from the body is unable to enter the lungs properly - and instead flows through the still-open ductus arteriosus - it returns to the heart in an oxygen-poor state. This condition is known as persistent fetal circulation, or PFC.

"The baby's circulation has not made the normal transition from fetal circulation to normal newborn circulation, because pressure in the lungs is increased and this causes distress," says Neal Cohn, MD, a pediatrician. Depending on the degree of PPHN causing the persistent fetal circulation, the oxygen in the air your baby breathes into his lungs is not adequately picked up and carried by the blood to other areas of the body that need it (such as the brain, kidneys, liver, and other organs). These organs soon become stressed from lack of oxygen.
So that's Drew's main problem at the moment.

His chest x-ray is a pretty ugly thing to see. His right lung is there, but a bit small. His left lung, well, he basically doesn't have a left lung there is so little tissue that is showing up.

It appears as though all of his stomach and all of his intestines are up in the left side of his chest. So is part of his liver. We were never told of the liver being up there, we asked at EVERY ultrasound that specific question and were always told, "NO, the liver is down." I'm a bit upset about that (understatement).

Drew cannot have surgery to repair these issues until he stabalizes. There is a possibility that the doctor would operate while he's still on ECMO but that poses some pretty big risks (can't move him out of the NICU, he's on heavy blood thinners--heparin--etc.). Right now, surgery is a part of the long-term picture and we're only thinking in the short-term.

He's been on paralyzing meds until yesterday because he's been trying to breathe over the machine. That's not good since he can't get rid of the carbon dioxide without the machine. Today, he's just sedated and we're waiting to see how he does.

He's also on nitric oxide (not to be confused with nitrous oxide) to dilate his arteries and increase blood flow. The surgeon was hoping to wean him off of it when he was put on ECMO but his sats went haywire (showed a large separation between what is taken in and what is taken out, which is bad) so they've left that alone. They are going to try and wean him off of the nitric oxide again tomorrow so let's hope it will go well this time.

Right now, he's in a holding pattern, not really any better but not any worse. Going on ECMO was devastating though, at least to me. That's how things are with Drew in a nutshell.


Anonymous said...

I want you to know that I feel your pain and the place you are sitting at is a horrible feeling. My son Alex was born on Sept. 26th. I did everything right and went to every ultrasound appt. but they never told me that his liver was in his chest. He also had shunting issues around his lungs. I want you to know I am not writing this to scare you but to let you know you are not alone and that you will be in my thoughts and prayers. My baby was strong and held on for exactly a month. He spent 21 days on ECMO, had his surgery, and was off for 6 days. Unfortunately he did not make it but hold on because Drew sounds so strong. God Bless, love and I pray all is well for your family and son.