Olivia Is Coming Home

We were told Olivia could go home today, Saturday. It’s just a matter of the highly secretive and enigmatic “Blue Team” writing the orders. Which makes me wonder, does it take long for an entire team to write “Go home” on a sheet of paper?

They took out Olivia’s chest drainage tubes yesterday, which I hear feels like burning. Thank goodness for morphine.



Olivia has been playing peekaboo with herself, grabbing at her toes, and doing a full-body squirm when she gets excited. We’ve been playing a bit and I’ve gotten to hold her a little as well.

Overall, seeing that she’s just had a major surgery and discounting the “smoker’s husk” her voice has going on, she’s doing quite well.

One picture below: Olivia awake with the staples in her chest.

Silver Lining

I'm at the hospital and Olivia has been asleep for most of the day, but when she woke up tonight around 9PM, she graced us with her personality again...

She started to whine a little, but when I said her name and walked toward her, she turned to me and smiled.

She's getting back to herself already. And only thirty hours after her surgery.

Amazing.

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.

Olivia’s Midnight Update

I just talked with the nurse:
—Olivia woke up on her own and fussed a little. I would if I had a tube down my throat, too.
—So they extubated her (no more breathing tube).
—She’s been breathing on her own now for a little while.
—She went right back to sleep.
—She may get her arterial line taken out tonight or tomorrow morning. This is the line that is basically floating in an artery to measure pressure and heart rate.
—Her central line may come out tomorrow. This is inserted under her collarbone into a main artery so they can administer meds quickly if need be.
—She has been weaned off ... something that starts with a D. It helps her heart.
—She is on Nipride®, a vasodilator which helps open up the vasculature to take pressure off that system (stemming hypertension) after things like major surgery.
—She is also on Nitroglycerin, which is a vasodilator as well.
—Olivia is also on something else that begins with an M. I think it’s for pain management.
—She is turning a bit more pink since they have given her some blood.
—They may try to give her some clear liquids (Pedialiyte®) tonight if she seems hungry.
—One more piece of great news. If she keeps doing as well as she's doing now, they may move her to a regular room tomorrow! Incredible!

I’ll be there by about 8:30AM tomorrow morning. So I need to sleep. I’ll get pictures tomorrow.

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.

Olivia's Surgery Complete

Friends and Family,

Olivia's surgery is complete. It went very well and the surgical team is very happy with the results. They chose not to insert the middle wall in her heart; instead, they basically rerouted all the blood to make it go in the top of the heart (the atriums) and come out the bottom (the ventricles) to the rest of her body.

Olivia will be fine until about two or three years old, at which time she will need to have one more surgery to complete the re-routing of the blood (called a Fontan procedure).

Reasons for not putting in the middle wall:
—Not enough heart muscle to sew on to.
—Too much wall to reconstruct.
—Reconstructing the wall would most likely have led to a heart attack.
—Reconstructing the wall would have been more of a "messy" procedure, and it would have led to at least 3 or 4 more surgeries through age 18.
—Doing the in-the-top-out-the-bottom surgery will only necessitate one more surgery at age 2 or three.

The plan for the rest of the day:
—Olivia has enough anesthesia to keep her comfortable for a few hours, so they will let it wear off and allow her to rouse herself and start breathing on her own (she's on a breathing machine now).
—They will take out the breathing tube this evening once she has proven she is breathing on her own.
—She will be given enough pain medicine to keep her comfortable (and sleeping) for the rest of today and into tomorrow morning.
—She is on three normal medicines now, but they should be weaned by tonight or tomorrow.
—Amy and I are spending time with Kayla and Maddie. Once they are in bed, we will go back to the hospital.

Olivia will be in the hospital for about the next week or two as she recuperates. Thanks for all your prayers!

Pre-op Done

We were at the hospital today for a total of ... too long. Now I know why they set up an entire day just to get you checked in—because it takes an entire day just to get you checked in.

EKG, lots of walking, find the “elephant” elevator, ECG, X-rays, find the “unicorn” elevator, blood draw, more walking, find the “rocket” elevator and the six stair steps, RSV test (negative ... yeah, boyee!), consult with the surgeon, walk some more, find the same day surgery clinic ... no, the same day surgery admin clinic, consult with the nurse anesthesiologist (anyone want to make $170,000 starting salary?), how many times is someone going to take her blood pressure, measure her head circumference, her height and her weight?, walk even more, are we done yet?, one more thing and I hear it includes walking...

We found out that Versed, normally a sedative, did not sedate Olivia for more than about five or ten minutes.

We found out that when she hasn't eaten since 2:30AM, she will drink or eat anything ... weak apple juice, the shoulder you prop her on, or the random finger of a nurse. Nurse Cathy, how are those stitches looking? Yeah, sorry about that. She was famished. I think I even heard Olivia said, “Carrrrrrrne asada!”

We also found that Olivia's colorful and inspiring butterfly toy is only inspiring in short bursts ... meaning, for those two hours between naps. In the same vein, we found that daddy is only funny to her between naps as well. And needles are never funny.

It's 1AM and I need to wake her up and feed her. Verse for the night: “We shall not all sleep, but we shall all be changed.”

Olivia's Surgery Is Scheduled

Just wanted to give a quick update on Olivia.

She has been getting more and more blue on a regular basis, so we have scheduled her heart surgery. Her pre-op is on Friday March 16th (heavy-duty EKG and such), and her surgery is on Monday the 19th. She should be at Children's Mercy Hospital downtown for around two weeks or so and we'll be in and out each day, with one of us staying overnight each night.

What will they do for this surgery? Glad you asked.
—Cut open her chest
—Put her on heart and lung bypass
—Take out her heart
—Cut it in half
—Insert a synthetic middle wall made of Gortex or Dacron
—Sew her heart back together
—Put it back in her body
—Jumpstart her heart again
—Sew her back up
All this will take about 5 or 6 hours.

Olivia is the happiest little girl we've ever seen, so we hope this whole ordeal doesn't change that ... I can't imagine why it would, but it sure is a lot for a seven-month-old to go through.

We would appreciate your prayers for Olivia (and pitch one for Amy, too ... moms have a unique way of carrying more than their fair share).

I'll give more info soon.