DAY 32 – CPMC/CHONY PICU

We are still here. Faith had a roller coaster ride of a day.

Summary

  • All over the place today high blood pressure / low blood pressure good saturations
  • CT Scan of the brain to rule out bleeds and or trauma from the cardiac arrest was as negative as can be told at this point. We don’t know the extent if any of any brain injury that might have occurred. So far we are positive.
  • Faith was moved from a conventional ventilator to an oscillating ventilator. Sometimes seen as a final desperate move by some or in some cases can provide an opportunity for very sick lungs to heal.
  • They will be starting a continuous EEG monitor to keep track of brain activity. Two reasons, ensure we still have preserved function and secondly it is not uncommon to have seizures after cardiac arrest. Some are so small you can only see them with an EEG.

The staff here is preparing us for the worse. There are no DNR (Do Not Resuscitate) orders on Faith but we have all agreed that if she should have another cardiac arrest that they cannot resuscitate her in 20 minutes they will have already lost our little girl and no other extreme measures would be taken.

Some might ask how can we even think of this as parents. It’s the role and responsibility we took on when we accepted this child from God to care for them and do what is best for THEM, not US.

We have not lost hope, where there is life there is a chance. It has just been a very difficult 36 hours. We have urgently summoned our children and family here twice during that time because we thought her journey was near its end. We know Faith is still in charge in there because she has been fighting stronger than she ever has.

Every hour that goes by is one more hour towards a successful recovery. Sue and I will stay within feet of her until she is past this latest stumble backwards.

We have super children and they have all been very strong throughout this, I know the pain and worry they feel for their sister and am so proud of how they continue to push through and fight every day for her.

17 thoughts on “DAY 32 – CPMC/CHONY PICU

  1. continued prayers and thanks for the update, been waiting for your news. Where there is hope there is miracles… I am not giving up on this child…. she is surrouneded with prayer and angels and the Lord is in control and knows what is best. I respect your decisions a her parents!!! God Bless you and your family. C’mon Faith keep on fighting…. she is so precious. Our continued prayers are with you 24/7! Hugs

  2. You are both remarkable parents. You have been models of strength and persistence and Faith is as strong and persistent as they come! Plus stubborn! Your faith in God is an inspiration and comfort to us all. We know she is in His hands and if he carries her home we will all still be blessed by all the gifts she shared with us. Thank you for the blessing that you and Faith are

  3. Remember God is in charge and will hold your family tightly to get you through this illness. I will keep praying for all of you. God Bless Faith.

  4. Thanks for the update Joe. Our thoughts have been with you today and we are all praying for Faith’s recovery. I spoke to my parents and sister to fill them in on the latest and they all send their love and prayers as well. Hope you have a restful and uneventful night.

  5. Thank you for the update Joe. I will continue to hang on to the hope of a miracle. My thoughts are with you and your family day and night.

  6. What very special parents you are…..with such a special little girl. Your journey has been very turbulent and exhausting, but still you find strength to share your story. God be with you, your family and Faith . Praying for your little angel.

  7. I pray for Faith every night. I know how hard your situation is. I hope with all my heart that she keeps pushing through. I hope you all continue to stay strong as well! You all are in my thoughts. May God bless you! Love you guys!

  8. My thoughts and prayers are with Faith and her whole family at this time, she is a special little angel that God has blessed you with! You are wonderful parents giving her the best care that you can find for her…….I and my whole Church Family will continue to pray for her…….and help give you strength……

  9. Sending love and prayers your way. May God bless your family! Thinking of you all. ((((((hugs))))))

  10. God will be ever holding Faith in his hands while many hold her in their hearts. Faith is an incredible little girl. We should all have her fighting spirit. I am continuing to pray for you all as you continue on the journey with Faith. Keep God in focuses you go through these days. May his hedge of protection grace your family and may He give the doctors Nd you all a clear plan for Faith. God be with you all. Love Julia

  11. My thoughts and prayers are with you at this time . May God Bless all of you. XOXO

  12. Faith is a very special girl and God is at her side. She is in our prayers everyday. Peggy & Ed Eckert

  13. Faith is a very strong and special girl and I know god is watching over her. I say a prayer every night for her. Sending my prayers and love to all of you and can not wait to see that pretty face back at school.

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