Wednesday, January 19, 2011

Today's Roller Coaster Ride

They say that CDH is a roller coaster, and today proved that for sure. Typically, I love coasters, but this is not a fun ride.

I hate naps, but was so tired so I thought I'd rest. Dennis was visiting Ramsey when he started shunting which caused his blood oxygen saturation to crash. Dennis tried to call my cell phone, but it was on vibrate so I missed the call. Luckily, one of the nurses contacted the front desk here at RMH and they got through to me on the land-line phone. Dennis told me they were planning to place Ramsey on ECMO and to come right over. Luckily, RMH is just a corridor and two elevator rides away.

ECMO is a type of life support often needed for CDH babies. It can save many babies, but is often viewed as a last resort. It works as a heart/luyng bypass. Read more about it below.

When I arrived, there was a huge team inside and outside Ramsey's room. Dennis had already signed the consent for surgery. They would soon do the surgery (not surgery for the repair, just surgery to place him on the ECMO machine) inside Ramsey's room. Dennis was holding Ramsey's hand and quickly let me take his place. The nurse told me that I should rest my head upon his and cradle my arm around him. I hesitantly did so because I was afraid to make matters worse. Up to that moment, they were providing his oxygen by manually bagging. Within moments of the bagging, my kiss upon his forehead, and placing some holy water from Majegoria on his head, our prayers were answered. The stats are usually 100 pre and anywhere from 70-100 Post. As he struggled, his post stats were as low as 30. Then, suddenly everything improved and the Post stats jumped back up to 70!!

One of the team approached us and started talking...neither of us really heard what he was was all a blur until we heard his final sentence, "For now, we can hold off on the ECMO". Ramsey's condition improved so rapidly that within a half hour or so, the entire team left. He is still doing well tonight. He is staying true to his name; he's a fighter, he's our strong soldier. Thanks to God for answered prayers!!!

Here is the information about ECMO from Breath of Hope, Inc. I tried to link to directly to this page on their site, but it wasn't working so here it is:

Extracorporeal Membrane Oxygenation
A great number of infants who are treated for congenital diaphragmatic hernia will require ECMO in order to survive. ECMO is the last resort in many cases for not just CDH infants but also for other conditions.

Every parent who hears the staff state that their newborn requires this, our hearts jump out of our chests. We know how dire our child's condition is at that time. Each and every hospital or medical center has their own criteria for ECMO and staffing. They also have their own standards for care while a child is on ECMO.  Many are similar but they may deviate from one another slightly.

Venoarterial (VA) ECMO therapy is used when support for the heart and lungs is needed. A catheter is placed in a vein (veno) and an artery (arterial). VA bypass is normally used for infants with heart or blood pressure problems. A surgical procedure, often done at the bedside so as not to move a critically ill infant, is required for cannulation or the placement of catheters in vessels in the neck (an artery and vein). The unoxygenated blood is removed from the right atrium of the heart via the catheter placed in the right internal jugular vein that is threaded into the right atrium.

Venovenous (V-V) ECMO supports the lungs only. In the V-V ECMO procedure, the surgeon places a plastic tube into the jugular vein through a small incision in the neck. This is also a surgical procedure, often done at the bedside so as not to move a critically ill infant.

Oxygenated blood is returned to the baby via the catheter in the right common carotid artery threaded into the ascending aorta. The amount of time an infant can remain on ECMO varies depending on his/her condition and on the recovery of the heart and lung function. The age of the infant, the original illness, the amount of damage to the lungs prior to ECMO and any complications that may occur with ECMO will also determine the length of therapy. The maximum amount of time is approximately two weeks but there are cases which have been on ECMO longer. There are several complications associated with ECMO.

These include:
  1. Bleeding due to the heparinization of the blood in the ECMO circuit to prevent the blood from clotting,
  2. Infection because of the introduction of a foreign object (the catheters) into the body,
  3. Emboli can be air or tiny clots that move from the ECMO circuit into the infant's bloodstream,
  4. Mechanical failure as a result of the circuit or any part of the equipment failing in its function. To provide ECMO specially trained staff is required. A physician who is familiar with ECMO and the infant's care are required to be available 24 hours. An ECMO specialist trained in the equipment and the physiologic process to staff 24 hour care of the baby is also required.


  1. My prayers will be with your family and that precious little one. I didn't know about CDH until tonight and I found your link through jaxson's jog. I will keep following Ramsey's story and praying for him and for all of his dedicated family and caregivers.

  2. Praying that Ramsey's condition continues to improve and you get the needed rest to be strong for him!

  3. You are in our breathing....prayers continue...