Laughing, Weeping, Living

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

The Little Blue Pill, and other Agnes updates

on November 13, 2013

Agnes continues to hang out in the Pediatric ICU at Akron Children’s Hospital. She seems to be very touchy and possibly in some pain; she fusses and starts to breathe really fast and her heart rate gets much faster anytime anyone does anything, however minor. She is receiving doses of morphine, versed (a sedative), and tylenol as she needs, which seems to be fairly often. Last night the PICU docs attempted to switch Agnes over to CPAP plus pressure support, and then to CPAP, but she didn’t like it and her lungs actually looked worse when they checked with an X-Ray this morning. She has lost some ground that now must be regained.

Meanwhile, we are still waiting for all the lab work and various cultures to produce results. So far, the only culture to show growth is the trach culture, but that is not unusual for kids with trachs and the doctors don’t think that is the source of her infection. The working diagnosis is shunt-related. I guess the shunt was malfunctioning slightly, which caused Agnes to vomit. Her neurosurgeon replaced part of the shunt in the OR when he externalized it. It is still draining to a bag outside her body while we wait for the Cerebral-Spinal Fluid (CSF) culture to show results. They do suspect the shunt is infected because the preliminary culture of the CSF showed elevated white blood cell counts there. We won’t know for sure until tomorrow.

Also a cardiologist saw Agnes and another echocardiogram was done. It showed significant pulmonary hypertension, worse than Agnes had before. So the cardiologist decided to start giving Agnes Sildenafil. This is the medicine used off-label to treat pulmonary hypertension in children. The FDA has recommended that it not be used in this manner because one study found that a few children died. The PICU doc I saw today explained that it is generally accepted that these children in the study died from their diseases, independent of the medicine. So, Sildenafil is used around the country to treat children with pulmonary hypertension. Sildenafil is also known as Viagra.

I wish I didn’t know that.

Anyway, I am glad Agnes is getting this medicine; I think it will help her. The risk of death for her will not be significantly increased by using this drug. The doctor told me that she has a very high risk of sudden death anyway, so…yeah.

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6 responses to “The Little Blue Pill, and other Agnes updates

  1. Daphne says:

    My heart breaks for you. What a cross to bear. Praying for all of you to have strength and courage to make it through.

  2. Kathy Schwager says:

    Such a rough road your family is on! My prayers are always with you. Much love to all four of you.

  3. Kay Becker says:

    I would just like to wrap my arms around all of and make it better——I pray for strength for You and Jeremy.

  4. JeneaSwainston says:

    My heart aches for you all. Continued prayers for your comfort and wellness and for Agnes to respond to treatment in a favorable way.

  5. mothersuperior7 says:

    St. Maria Goretti, bring this child strength, her parents; courage, and please give the Doctor’s wisdom! Amen

  6. Becca says:

    You and Agnes are in my thoughts.

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