Laughing, Weeping, Living

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

Up in the Air

on January 18, 2014

There is not too much to report on Agnes since a few days ago, other than her overall condition appears to be stable and slowly improving. Yesterday she did very well maintaining a body temperature without the hot air blanket or the medicine that assists with perfusion. She is also in process of weaning down the hard-hitting narcotic pain killers. She is also clear of the intestinal infection that caused some swelling and “free air” in her belly. Her lungs sound back to baseline for her, which is to say they are stiff and slightly diminished on the left side, but at least she’s back to “normal.” She is happy on her home ventilator.

But today they decided to try stimulating her guts by starting tube feeds at a very slow rate, and she didn’t like it. She spiked a temperature and some formula seeped back out to her stomach where it appeared in the suction tubing. I guess that’s the nice thing about Agnes’ G/J tube: you can feed her guts while leaving the stomach open to suction, which helps prevent throwing up. So Agnes demonstrated an intolerance to food, so they stopped feeding her. I’m not sure what the plan is for restarting.

Plus it is not clear whether her shunt is actually working or not. I do believe that it was functional at the time of the CT scan a few days ago. But in the meantime, the neurosurgeon tapped off some fluid and that procedure demonstrated a very high level of pressure in Agnes’ ventricles. Plus today she was very sleepy. So…I guess we’ll see on Monday what the next CT scan shows.

All in all, we are still in a grey area. Agnes did improve her condition since last week; she is like a new baby! We are grateful for that and happy that she didn’t die. But as we go on, it is not clear whether this recovery is lasting, or if she is on her way to a relapse. We are very conflicted about how to proceed here. We were sad she was dying, but also a bit relieved that she wouldn’t have to suffer anymore. Now that she got better, it feels as if we are traveling the same road again, the road of suffering. The fact that Agnes did recover is a miracle and the mid-week news that her shunt was working felt like another miracle. Those events happened and many people derived spiritual benefit and faith, and trust in God because of those events. Now we know that thousands of people are praying to saints and to God on behalf of Agnes and our family, which is amazing. Even if Agnes takes another turn for the worst this weekend, that extra week she was here brought boundless grace to thousands of people. Who knows what she will do from this point forward, but every day she is here is a gift and an opportunity to draw close to the Lord and experience grace.

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One response to “Up in the Air

  1. JeneaSwainston says:

    Well said, Judy…your little angel has touched so many of us and will continue to long after she is not with us here. Her little life has been such a blessing in my life. I feel so bad for her suffering also. Praying for comfort for your family.

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