Trevor got up at 3am and 6am to eat, but otherwise we all slept in and got some sleep. When I left the hospital yesterday, I had to keep telling myself that it did me no good to sit there 24 x 7 and obsess about every little thing, I had to have faith that Brendan would be safe and that I could do nothing more to help, especially if I was exhausted.

There was some big news yesterday. On rounds, the doctors all decided that they were not happy with how well Brendan’s blood was oxygenating and that he was bluer than they wanted, even though all of his blood work indicated that his body was compensating well for his blueness. If you or I had his oxygen saturation levels, we would be passed out. But his body is used to it and knows how to manage.

They decided to do a “bubble study” which is where they use an echocardiogram and they inject agitated saline filled with microbubbles in to his PICC line. It was pretty amazing to watch, actually. What they were looking for as they watched the heart is no sign of the microbubbles. They should have gone straight to his lungs via the new Glenn circuit. But sure enough, all these little bubbles poured in to the heart instead. As they studied the previous cath results, CT and echocardiograms, they were able to tell that this pathway for blood was not there prior to surgery.
Once they operated and changed the pressures and blood circuit, some veins they call “collaterals” opened up and they are providing the blood a shortcut around his Glenn and still letting the blue blood in to his heart. They also act like a pressure relief valve and are keeping the blood from having enough pressure to get through his lungs properly.
I was mixed with emotions as they talked about it. The last thing Brendan needs is more complications and something new to fix! But I was absolutely amazed at the body’s ability to try to fix itself after it was surgically altered.

So the problem now is that closing these collaterals involves going back to the cath lab. They can insert little coils to close off the veins. Going to cath lab means anesthesia which means intubation and Brendan’s intensivist is VERY against intubating at this point because he might have problems getting back off of the breathing tube.
The other thing to do is trying to manage him as is, and give him time. As he gets used to his new circuit and his lungs get stronger, these small pathways will not really be an issue. His lungs will learn to deal with the new blood flow. The question will be whether he can manage while we wait.
Does this all sound familiar!??! I thought we were done with this rock and hard place nonsense on Monday when they finally took him to surgery.

Brendan needs his little bandana to keep his pacifier in so that there is no pressure leak from his cpap.

The good good news for Brendan yesterday is that he was able to spend about 6 hours off of the cpap and give his poor nose and head a break! He was super blue like this without as much pressure support, but he hung out on the very edge of acceptable numbers so they let him rest. We were very happy for him. Each day maybe he can go longer on the regular cannula.

So his primary cardiologist is working this weekend trying to find the data he needs to decide about closing those shortcut veins. His intensivist will throw himself in the way of the door to the cath lab if they can’t guarantee that it will take a lot less time to recover from this procedure than it will to just wait for his body to adjust on its own.

In the meantime, Brendan hangs out “bluer than a squid” as his NP so lovingly says. She also called him a blueberry-head while she promised me that she sees so many babies this way and that today they are so happy and normal and active.

Trevor’s luxury bath time is the highlight of his day. He has the softest skin I have ever felt, even on a baby!

Trevor thinks he is awfully big now and he can hold his bottle himself.

In fact, he is growing too fast. Gramma is trying to stretch out his jammies because his little toes are already crammed in to the feet of a 6month size!