Days 4 and 5 have not been very good.
Maddie’s heart rate has been consistently high over the last few days. Her tachycardia, arrhythmia, and the continual drainage from her lungs have led the cardiologists to believe that something is obstructing the Fontan system.
There are three possible reasons for this blockage: 1) A closed fenestration, 2) a blood clot, or 3) the new Fontan hardware could have been pinched during the final closure of her chest cavity.
The fenestration, or hole placed in the new tube they engineered next to the atrium, is possibly closed. The hole acts as a release if the pressure from the fluid change becomes too high. All signs point to closure as a first cause.
Another reason could be a blood clot has formed somewhere in the Fontan circuit. This, of course, is a particularly problematic situation. Clots travel through the circulatory system and can end up in the brain causing a stroke. Blood flow through the pulmonary veins show that this case is unlikely the cause right now.
The final possibility, that her tubes have been pinched, is the worst because it will require surgery to repair. The likelihood of this scenario is far less than the others.
She is absolutely miserable. She’s sweating but has cold extremities and poor profusion. Her vascular system is dry in that the output of fluid through the lungs is greater than the amount of hydration going in or being replenished. Overall, she is not progressing.
Today we were informed that a heart catheterization would be necessary to go in and examine the Fontan and the fenestration to see if the hole needs to be reopened and widened. That is the easiest and most likely scenario and solution.
She is going in sometime in the next half hour (5:30PM Pacific) and will be in the cath lab for up to 3 hours. Of course she will be fully sedated and will come back into the ICU for recovery.
I know this post is extremely technical but I wanted to write this all down to work it through in my own mind. Hopefully, you’ll get a sense of where she is at, clinically speaking.
She has had heart caths before but this time the risk is increased because of the higher potential for dislodging a clot somewhere in the Fontan system. The 5-10% chance of stroke is weighing on my heart and mind so greatly. We’re asking, once again, for your faith, prayers, and positive energy.
We will post more once she is back in the ICU.