Kurt Cobain's Glenn-head or How I got my Superior Bidirectional Cavopulmonary Shunt

Not too much has changed since the last post. Ford is being tweaked by the ICU staff and is in relatively stable condition. They were unable to wean him off of the ventilator over night and he will remain intubated for at least another day. As with the last surgery, they are trying to manage his oxygen saturations by increasing and decreasing the artificial supply they give him. He's sitting comfortably at 25% right now, which is pretty close to room air. Hopefully that will remain a minor issue instead of the constant irritation it posed post-Norwood. The bigger issue is weaning him off the pressure support they are supplying his lungs. Apparently they are quite "wet" and he has been struggling (as usual, perhaps) with a collapsed left, lower lobe. One of the consequences of this latest surgery is that his lungs are now overwhelmed with new blood flow and are probably in a state of shock, if not total panic. The increase in flow is responsible for their 'wetness' and tendency to collapse, and it is also producing what I suspect to be a mild case of "Glenn-head."

Prior to operating, Dr. Campbell sat down with us to explain what was going to happen as well as all the known side-effects. Glenn-head was a term he used to describe an often dramatic swelling of the head as a result of the sharp increase in CVP (central venous pressure). Ford's new physiology has all the blood returning from his upper body, via the "superior vena cava," bi-passing his heart and draining directly into his lungs. Without the pumping of the heart working to suck the blood down, the flow is relying on residual pressures and gravity to move. If his lungs are not expanding fully they start to put resistance on that flow causing it to back up. Into his head. Not only does it look unpleasant, but we are told it produces extreme head-aches. For what it's worth, healthy adults have a CVP of 0-2, healthy newborns of 8-10 and Ford's was sitting steady at 28-30 for most of the evening. He looked markedly more swollen when we got back to hospital after dinner this evening and by the time we left it looked like he had bulbous insect eyes. My poor baby! In many ways he looked worse than yesterday, despite the dressing change (which significantly lowered his gore-score).

This experience was tempered by frequent comments from nurses and doctors, all excitedly relaying how wonderful he looked and how well he was doing, with me slapping my forehead saying, You've got to be kidding me!

But I guess it's really all par for the course. If they aren't panicking we shouldn't either. Maybe in that sense being in the ICU is like being on plane. An incredibly turbulent, 5 month plane ride with the same bad sandwiches every day (although not lately thanks to Paige and the food train! We really have been eating like kings the last few days and that makes all the difference. Thanks guys!)

Otherwise, he is still being "paced," which was a bit disheartening to see this morning. We were told (and are still being told) that it is a temporary phenomenon. His heart, having now suffered its 4th (if you count the 2 cardiac cath's) insult, is potentially a little ticked off. He is suffering from something called "heart-block" where the electrical signals that trigger the 4 chambers (or in his case, 2 chambers) to beat rhythmically are firing inconsistently. We are reassured to hear that he still has an underlying rhythm (around70bpm) and are hoping whatever damage has been done clears up soon.

If you will allow me to comment briefly on my declining sociability (perhaps these last few months have been less like a plane and more like being locked in an attic for years), I will offer a small piece of wisdom. When given the opportunity to comment on the wardrobe of the attractive and highly-educated Cardiac CNS, especially if offered a surgeon's preface: You look so rock and roll today! Do not glibbly quip: Yeah! you look like Kurt Cobain.

I swear I meant it reverently. But the grim and greasy-haired king of grunge rock has so little to do with the world of congenital cardiovascular nursing... I may have totally alienated one of our best advocates.