Somewhat better of a night than the night before but still having respiratory issues. We know it’s not her upper airway as that is bypassed. She is requiring much more supplemental O2 at night than in the day.

Basically her lungs are still sick and need time to heal and time to get rid of the fluid she has on them. She has spent most all of the day very sleepy and sleeping. She’s fighting a good fight and I’m glad she is getting the rest. You can tell from her heart rate that she is much more at ease today than yesterday.

The Good news:

  • Infectious Disease (ID) has now confirmed that she has been running negative cultures for the past several days for BOTH infections. The positive the other day was FALSE and due to contamination. This means the clock for 6 free days of infection is closer rather than reset. We should know definitely in 72 hours.
  • So far today NO fever
  • Hematology gave her a clean report on the genetic testing they did that would indicate any genetic basis for a clotting disorder. The good thing about that is the clots she had were just an anomaly and not something we need to worry about for life. She has already completed one month of the three months of injections she needs for it so many steps ahead on that one.


Tender Jesus, meek and mild,
Look on me, a little child;
Help me, if it is Thy will,
To recover from all ill.

2 thoughts on “DAY 23 – CPMC/CHONY PICU

  1. Glad to hear mostly good news. I will continue to pray for Faith’s respiratory issues to improve and her lungs to heal. Hoping she has a good day today also

  2. Praise God from whom all blessings flow!!! Praying and may the Lords healing hand touch down upon and her and give her (and family) peace! The Lord is with you and will guide you. Give it ALL to God for he is in control and is with you! Casey sends her hugs, she was sent home sick today and wants Faith to know that whe cannot wait to see her again, she so misses her! Hugs from us all!

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