Laughing, Weeping, Living

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

9 Lives?

on January 14, 2014

So…Agnes is not dying anymore? Maybe? At least not soon? Maybe?

Agnes is very slowly crawling back from the edge of death. The doctors have been able to turn off a couple of the medicines, and reduce some of the ventilator support, and take off a lot of the fluid that had built up in Agnes’ body.

It seems as if Agnes is enjoying another of her many lives. Make no mistake: Agnes is still very very sick and it is entirely possible if not probable that she will not make it home this time. But, there is a hope that she will recover. There is a small chance now that she will become well enough to live at home again.

Since she seems to be on the mend, Jeremy and I have to start making decisions about her care again. We can’t ignore the shunt anymore. We already know it isn’t functioning, so we have decided to try again with the plan we developed before Agnes decided to have a near-death experience. The neurosurgeon will get a CT scan tomorrow morning and depending on what that shows, and depending on Agnes, she may go to surgery for a shunt revision Thursday or Friday. The neurosurgeon will lengthen the catheter in Agnes’ heart so hopefully it won’t pop out again. If it does, we will know without a doubt that a VA shunt is no good, and we will have to make some serious decisions. But, at least we will know for sure, having given the VA shunt every opportunity to work.

It is strange territory, where we are. On the one hand, we know Agnes has an underlying condition that is terminal. On the other hand, she does not appear to be more ill than she has at times in the past. What should we choose to do? Should we aggressively treat her, knowing that anything we do is merely a band aid? Should we leave her alone and keep her comfortable while her body fails at an unknown pace? This is really hard.

We still have a lot to decide, and the goal line is definitely shifting every day. That is really hard, too. For the present, we will address the urgent issues like her shunt and her respiratory status, and see what she does.

I know I’ve said it before, and I’ll say it again right now: MIRACLE. Agnes was more or less dead and now she is not. We have been given an opportunity that we don’t want to waste. It is clear that Agnes has more work to do on this earth. I can’t even believe the number of people who are praying for her and for our family. It must be thousands with friends and family, and friends of friends of friends… and all over the world, too. It is amazing that such a tiny, sick baby can inspire so many to seek God through prayer. Agnes is truly helping to save souls. Her suffering is bringing graces to thousands of people. That is a miracle, too. There are so many hearts united in her cause. How can we not believe in the power of prayer, with what we have seen in Agnes’ life?

Slowly recovering from near-death.

Slowly recovering from near-death.

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3 responses to “9 Lives?

  1. ’Lobe den Herren’/’Praxis Pietatis’ (Praise to the Lord, the Almighty, the King of creation)

  2. God is good and definitely he DOES have plans for you and little Agnes.
    He will show you how to embrace his own decision when it will be the right moment.
    Many prayers, on going prayers, continuing prayers for you all

  3. Penny says:

    I think that the way you are listening to her body is sound and her body is telling you she has more time and more purpose. You and your doctors are sensitive to futility and it seems like that hasn’t arrived yet. I think that how we care for our loved ones with terminal conditions are the same at end of life as at beginning for people like you. People of faith. If Agnes’ care can preserve her dignity and value to you and those praying for her, assure you that her life has meaning, surround her with love of family, and make her comfortable, then you are honoring her the way our Father would ask. You are so admirably strong in such a tough time. Know that we raise our eyes to Heaven for you and Jeremy, your folks, and Stephen, too, asking that He fortify you and guide you. Agnes’ chapel candle burns here and we thank God for this little healing and ask that God’s will be done. I just hope and pray that God’s will includes time for Agnes at home with joy and smiles and freedom from the hospital, even for just a bit.

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