Holy Crap

Bubs has taken another turn for the worst. His oxygen saturations have fallen back down into the 70s, and sometimes 60s and 50s. He spent the day getting tested.

This morning they did a bubble test to look for another collateral vein. They inject water into his veins. The water makes bubbles so they can track where its going. If the water shows up somewhere it doesn't belong, we know an unwanted vein took it there. Unfortunately, the central line in his chest was too old and the test didn't work. It was a struggle trying to get him to hold still for the cardiologist - he ended up getting an Ativan that knocked him out for about 7 hours. That was just as well as he later had to get a chest ultrasound, an xray, and a pic line in his groin.

The bubble test was horrible. The cardiologist running the test (let's call him Peter Koenig) was a jerk. Pre Ativan, when Bobby was crying and squirming he started to mock Bobby. "Wah-wah-wah, I know you don't like this. Wah-wah-wah." Now no one enjoys a well-timed mocking more than me, but an 11 month old who is upset about being held down by 3 adults is not really a prime target. When the cardiologist suggested we sedate Bobby, I asked for the ICU doctor first, because we do have a recent hideous history of sedation gone bad. "It's up to you," he said. "But I can't do a good test if he's moving around." "I understand," I told him. "I just want to slow down and think about what we're doing". He then proceeded to hold a piece of paper in front of my face and wave it up and down asking "Can you read this? This is what it's like for me trying to do this test while he's squirming?" It's sad when Bobby is the mature one in a patient-doctor interaction.

Later in the day after Bobby desatted into the 50s, I freaked out a bit. This Glenn surgery generally requires a 4-6 day stay afterwards. Now I knew it wouldn't be 6 days. Bubby can spend 6 days in the hospital with a hang nail. But I didn't expect that after 14 days our surgeon would tell us to expect another week. Puke. Part of me worries that this was all a horrible mistake. It's not logic talking, as I understand the options weren't many, but it's hard to deal with repeated setbacks.

They think that he has sprung another leak and has a collateral vein. However, these usually spring up when a baby has high pulmonary pressure. The high pressure creates resistance against the blood flowing to the lungs so the body takes the path of least resistance and creates a collateral that flows to the heart, where the pressure is low. Odd thing is, Bobby doesn't have high pulmonary pressure.

The surgeon, Dr. Kaushal, is as nice as the bubble test cardiologist is...well anti-nice. He took quite a bit of time discussing the options with us. The most likely scenario is that he'll have another catheterization Friday or Monday and get his collateral plugged. Then we'll hope he doesn't spring another leak. The surgeon said he is optimistic that Bobby will get through this with no further surgical interventions. The worst case, however, is one more operation where they place an additional shunt in the aorta (called a "modified BT shunt" procedure). The idea is that Bobby's sats are low because not enough blood is going to the lungs to get oxygenized. This operation borrows a little blood from the heart and sends it to the lungs, thus helping the oxygenization along. Of course, prior to the surgery we learned that, for Bobby, blood going from the heart to the lungs is bad and now it may be what he needs. Holy crap indeed.