Fontan Recovery: Heart Catheterization

Sister and brother

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.


12 thoughts on “Fontan Recovery: Heart Catheterization”

  1. I can only imagine the pain and anguish your mother heart is experiencing right now. I am so sorry you are having to endure this trial. We are keeping a constant prayer in our hearts and our minds right now for our sweet Maddie. We are praying that this procedure is successful, we are praying that the doctors and her care team will be guided to be able to figure out with 100% accuracy what is causing the irregular heartbeat, and we are praying that peace and comfort can envelope you! Heavenly help and angels surround you!


  2. We love you all and will continue to pray for Maddie and your family. The picture with this post is priceless, you can see how much they love each other.

  3. Thinking of you and darling Maddie, Jeannie. I’m so sorry that things are not progressing as hoped in her recovery right now. I’m holding good thoughts (and prayers) that the heart catheterization will provide the answers to what is causing the problems she is having, so she can quickly get the treatment needed to correct them!. Hang in there! Many, many people are praying for all of you!

  4. We think of you and Maddie everyday and hope that she will soon be on the road to a good recovery. I can’t imagine going through all of this without the support of many friends and family. You are in our prayers.

  5. My thoughts and prayers are with you and your family. I am so sorry Maddie is having a difficult recovery. I will keep you close in prayer during this trying time…waiting is so hard on the family but necessary to find out the cause of the setback and to fix the problem…Better days ahead…

  6. Praying for Maddie and your family, Jeannie. My heart is heavy as I can only imagine the feelings of your hearts and anxiety as parents. I know the power of the Atonement can be powerful beyond measure to provide peace and comfort, and that is my prayer for you and Maddie at this time. Praying all goes well tonight. Love from the Bruggeman’s.

  7. Our thoughts and prayers are continuously with Maddie, the family, and all those working on and with Maddie through this process. She is a fighter, and will continue to fight! Love and hugs, Jeannie.

  8. Oh Maddie. We were so sorry to hear this news. We are praying for her and for your family. Much love to all of you.

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