Laughing, Weeping, Living

Life happens. You laugh about it or cry about it, sometimes both.

Stupid Shunt

on January 8, 2014

Agnes was home for one week then on Monday morning early she was up to her old tricks. The overnight nurse did something like change a diaper or reposition Agnes, and she got mad. Her O2 saturations dropped and they wouldn’t come back up. We tried a bunch of stuff. She puked. We called in and they told us to go to the Emergency Department. We arrived and prompted a flurry of exciting, critically urgent care. They rescued Agnes with aggressive treatment. Agnes was admitted to the PICU. X-Ray and CT films were taken, cultures sent away to check for infections, heavy-duty hospital ventilator was fired up and Agnes got snuggled in for a inpatient stay.

We were hoping all her outpatient follow ups we had scheduled for this week would have satisfied her longing for hospital life, but she missed her favorite PICU staff. She must have heard that her favorite intensive care doctor was attending on Monday morning or something.

Anyway, to make a long story short it ended up being a shunt malfunction at the root of her distress this time. Plus a bit of an upper respiratory infection (read: a “cold”) thrown in for fun because why go halvsies when you can go all the way?

The neurosurgeon repaired Agnes’ shunt yesterday by replacing the valve and flushing out the two sides of the shunt tubing, but today it appears the problem is not solved. The brand new valve works great! The shunt is still not draining out her brain juices, though. So the neurosurgeons have three more things to try:

1. flush the distal side of the shunt tubing (the end that goes to Agnes’ heart) with an anti-blood clotting solution to break up any clots, if there are any. It is possible there is a small clot in the catheter that is preventing flow. They will try this tomorrow (Thursday) morning.

2. go to surgery to reposition the distal side of the shunt tubing deeper in Agnes’ heart so that the high pressures in her heart can not push the tubing out of place. They will try this Friday.

3. if those two solutions fail to produce a working shunt, the last thing to try is placing the shunt to Agnes’ gall bladder. This is very uncommon and has an iffy rate of success in even the more favorable patients. The neurosurgeon said he hasn’t done one of these in years. Also the risk of infection is much higher because…gall bladder. They will try this if/when the VA shunt proves a failure.

And that’s the end of the line. If Agnes burns through that short list of options we are done. There is nothing left to try on the cure-focused path and we switch by necessity to the path where we keep her comfy and manage her symptoms until she dies. We did start the conversation about hospice options today, just to start gathering information.

Jeremy and I are both very sad. Given Agnes’ history with her shunts, there is only a slim chance any of the final three options will work. There is still opportunity for a miracle, but I’m not counting on it.

Of course we remain grateful for your prayers. We are counting on them at this point. We don’t necessarily want prayers for healing; that is not realistic. Prayers for strength and discernment of God’s will would be lovely. Prayers for the doctors and medical staff who will be talking with us in the coming days and weeks. Prayers that we will always choose the course of action that will be best for Agnes. Prayers that we will feel peace about the decisions we make. Prayers that we will know it if the time comes when we must let go of Agnes’ earthly life.

2 responses to “Stupid Shunt

  1. mothersuperior7 says:

    Prayers for a miracle are always in the mix. What are you learning Judy? I’m proud of you that you have kept your sense of humor. We have to. As sad as it is, don’t lose that. Preserve every minute you have with her. Guard your heart and rest in God’s mercy. Thank you God for letting you live in a first world country and you have wonderful people surrounding you. Be at peace knowing our Lady is right there with all of you. Hold Jeremy’s hand so he doesn’t close into himself and you into yourself. Hold onto each other and help each other. Be doubly thankful for your faith. That if Agnes dies, you know where she is going. You have done your best. You will see her again, whole and happy and content and running and playing and laughing. Thank you God for good doctors and nurses! Kind people. We need them so much. Thank you for your good parents who have helped you so much and weep with you. We will pray a rosary for your strength and sanity. love, marti

  2. Penny says:

    Oh Judy and Jeremy, after all the trouble with breathing and feeding and puking and ventilators………it just seems so weird that the shunt would be the deciding factor. now. Thank you for the guidance in prayer and I will pray as you request. But I believe in the God of miracles, too, and I will also pray that there is more time at home, with Agnes peaceful, watching her world, maybe a smile or two, in family with her Mom and Dad and big brother for however long it is until she has another episode. Regardless of God’s eventual plan, I will remember the Christmas socks and the pictures where she is just WAILING with indignation, and smile when I think of her and her resiliant though struggling little body. Love you all. Penny

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