An Anxious Weekend

This weekend has had Jason and myself on edge as we anxiously await for Tuesday to get here. At this point they have stopped Henry's breastmilk feeds. His vitals have been very near the border of where everyone is comfortable. The oxygen levels around his kidneys and intestines were trending quite low Friday night so we paused his feeds and upped his milrinone. We waited to see his blood pressure stabilize and make sure it wasn't too low before they started the feeds again. Overnight, he had a bit of throw up, so they paused the feeds again.

Henry's surgeon, the rest of the ICU team (and Jason and I) agree that it is not worth the risk. He is being switched to IV nutrients (TPN and lipids) until after his surgery. We are very close now, and no one wants to rock the boat.

And so, we are hanging out with Henry, trying to not get too anxious at the numbers at each assessment. Henry is doing fine, but I think he is as ready for Tuesday to get here as we are!

In the meantime, here is some more information about the surgery on Tuesday.

This is a great diagram I found from an article in the journal Nature. You can click on the picture to go the full figure and legend from the article. It goes into excellent detail about the surgical procedures.

Right now, Henry is at image B and the post-Glenn procedure is image C.

After the surgery, they will try to get Henry extubated as quickly as possible, once he has woken up. This is because the ventilator will actually be counteracting his new physiology. After the surgery, the blood from the upper part of Henry's body (from the head to about level with the heart) will be passively draining into his lungs. The vent would be giving positive air pressure preventing that from happening.

The biggest concern is to see that his heart function returns to at least its current level, once they restart his heart in surgery. The risk is that it will not be strong enough to pump on its own so he can come off of the bypass machine. We feel confident that if the surgeons thought there was little chance of coming off of the bypass, they would not do this procedure - but the risk is there.

Back in December, Children's Mercy had a Kansas City station air "Inside Pediatrics". The series follows a set of families and their children's journey through various medical conditions. For the first three parts, one baby is followed that has hypoplastic left heart syndrome just like Henry. Unlike Henry though, this boy was able to go home for some time before his Glenn. The journey in the videos follows him through the Glenn procedure, which is what Henry will have on Tuesday. For those interested, here is the link: http://m.kmbc.com/news/inside-pediatrics-premieres-dec-17th-on-kmbctv/30119040

There are several doctors and nurses in this series we have run across in our stay here at Children's Mercy. Fair warning, this is a real tear-jerker.

We are not expecting to be able to go home as quickly as this little boy did. Even when Henry is fully past the main risks of the surgery, he will have been on a ventilator and a cocktail of opiates & benzodiazepines. He is going to need some time to re-learn how to breath and eat, and we will have to begin the struggle of weaning him off of the drugs.
We still have a long road to travel to get home, but we do feel this is the right choice for Henry. Thank you, everyone, for your support and continued thoughts and prayers for us and Henry.