Olivia's Surgery, Day Two

Alrighty, here's an update. I'll use bullet points so I don't ramble.

—Olivia's (bi-directional) Glenn procedure is done. The complete Fontan repair will happen between 2-1/2 and 3-1/2 years old.
—Her O2 sats average 78–85, which is great for her, but bad compared to normal people; everyone else's oxygen saturation levels in their blood hover right at 100%. She'll average 95–100 after the Fontan.
—She is still a bit blue-ish, which is normal for right now since her body is getting use to the passive blood flow from the top of her body due to the mechanics of the Glenn procedure.
—Her puffiness from the procedure is going down.
—She still has staples in, of course.
—As of about 4PM on Tuesday, we have been moved to a regular room.
—She was on a few meds to stabilize her, but she's dropped down to a mix of Morphine and Oxycodone (codeine) and Motrin for pain, and a bit of Lasix which helps wick away excessive moisture from organs.
—She hasn't given us any urine since this morning, so we put in a catheter and got a bit out.
—Other than that, she's sleeping well.
—She hasn't shown us any signs that she really recognizes us yet, but she hasn't been awake for that long at a time either, so I'm not too worried. She still probably has a massive headache, and she's very sore. When she is up, she is limited in her movements due to pain and IVs and stuff, so that has to be frustrating.
—Even though she gets a bit upset when she is awake, she calms easily.
—She has two Blake drainage bulbs for either side of her chest cavity; these pull out liquids that are running loose. So far they said our stay has a lot to do with how those keep draining. The sooner they clear up, the sooner they will send us home ... but at the moment it looks like Monday or Tuesday since they are still pretty chylous (cream colored instead of red/pink, meaning there's drainage from her lymph system that seems to be more than the blood concentration).

Time to try to feed her.

And now, for the weak of stomach, avoid scrolling down. I am posting a few post-op pictures below. Click on them to enlarge them.

About Olivia's Procedures

This is a post for the info-minded. And it's not short.

Many have asked what kind of surgery Olivia had, what makes it different from the next surgery and how it all works. While my understanding is still limited, I'll try to point you in the right direction.

First, here's a normal heart, followed by a Tetralogy of Fallot heart, which is what Olivia has been dealing with.



Olivia has a heart defect called Tetralogy of Fallot (rhymes with shallow, with the emphasis on the last syllable). Also see here and here and here for great info on TOF. “Tetra” means four, as in the popular game Tetris in which four squares are arranged in shapes that must be fit together in rows to gain points. Tetralogy, then, is the study of a series of four heart defects categorized by a frenchman named Etienne Fallot around 1888.

As some of you have noticed with Olivia, infants and children with tetralogy of Fallot usually have blue-tinged skin (cyanosis), lips, nail beds and any other part of the body where blood flow is close to the surface of the skin. It is more pronounced especially during times of exertion. As you can see from the picture, Olivia had a ventricular septal defect (VSD), which is a hole in the wall that separates the left and right ventricles. This hole can be small or large, but Olivia's was quite large; more than three-quarters of the entire span of her heart, which made it impossible to repair the hole. [Click here for some key points about TOF.]

As seen in the last link, a week after Olivia was born, she had a Blalock-Taussig shunt (BT shunt) put in. It's an artificial Gortex™ artery intended to put more oxygen-rich blood into her heart to be pumped out through her body. The problem is, with that VSD, once the oxygen-rich blood was pumped into her heart, it mixed with the blood coming back from the body that had already delivered its oxygen payload ... oxygen-rich blood + oxygen-depleted blood = oxygen-diluted blood. She wasn't getting enough oxygenated blood pumping throughout her body, which brings us to the current surgery. The BT shunt was just buying some time until her body could handle some major open-heart surgery.


The surgery she just had is called a Glenn and the next one will be a complete Fontan repair, which is the final step in this two-step process.

From the Mayo Clinic site:
“Often, children with [TOF] require more than one surgery. The goal of these surgeries is to create sufficient blood flow into and out of the heart and lungs, allowing your baby's body to receive the proper amount of oxygen-rich blood.”

“The first step, sometimes called a bi-directional Glenn or hemi-Fontan, is typically performed around four to six months of age. It reduces the work of the right ventricle by allowing it to pump blood mainly to the aorta and allowing most of the blood returning from the body to flow directly into the lungs. After this operation, all the blood returning from the upper body is sent to the lungs, so blood with more oxygen is pumped to the aorta to supply organs and tissues throughout the body.” And another paragraph: “The Glenn procedure: When babies have outgrown the [BT] shunt, they often require a surgery that sets the stage for the Fontan procedure. Doctors usually perform the Glenn procedure when a child is about 6 months old. It connects one of the large veins that return blood to the heart (superior vena cava) to the pulmonary artery. This allows oxygen-poor blood to flow directly to the lungs. The procedure reduces the workload on the left ventricle, decreasing the risk of damage to it.”

“The second step, called the Fontan procedure, is done between 18 months and 3 years of age, [but they are planning on doing this between ages 2-1/2 and 3-1/2 in Olivia]. It allows the rest of the blood coming back from the body to go to the lungs. After this procedure, there's no mixing of oxygen-rich and oxygen-poor blood in the heart, so [Olivia's] skin will no longer look blue.” And another paragraph: “A surgery called the Fontan procedure is the best option for treatment ... During a Fontan surgery, the surgeon creates a path for the oxygen-poor blood returning to the heart to flow directly into the pulmonary arteries, which then pump the blood into the lungs.”

Summaries are supposed to be shorter, I know, but hopefully this better explains what she's going through.

Thanks for all the prayers and calls. The surgical team was outstanding and Olivia is doing well.