Today’s vocabulary word: labile adj: characterized by wide fluctuations (as in blood pressure or glucose tolerance) <labile hypertension>

Faith continues to make baby steps forward. They are having some difficulty regulating her blood pressure. For reasons unknown she swings from normal to hypertensive or hypotensive without a known trigger right now. The dialysis is pulling quite a bit of fluid off of her and it might be related to the emboli or the original infection.

  • They have restarted one of the antibiotics she was on because changes in her white blood count might indicate sepsis again.
  • They have fine tuned her sedation medications to hopefully help with her blood pressure.
  • They have been reducing the ventilator support and Faith is tolerating it very well, for the first time in a while they haven’t been chasing her O2 saturation’s up and down.

When I arrived home tonight I found a card in the mailbox from Faith’s best friend Casey and a note from her mom (I’ve edited the very personal parts out).

Sue & Joe, I had to share with you – Casey’s birthday is 5/19 she is not having a birthday party this year…one reason, Faith would not be there…but I came home from work and she had made a card on her own for Faith (see below) – well I cried – she said all I want is for Faith to be healed & come home & be all better – I don’t need presents. So her “birthday” wish & prayer is for Faith this year! Your daughter touched Casey’s heart from day 1 – when they met! She has always adored her (as I). I will never give up hope or prayers on Faith – she is a gift from God & her purpose is not done! I am so sorry for all your going thru bu now I have called in every resource possible for prayer!


Casey, Faith will get your card tomorrow morning. It will be proudly displayed in her room. You have so brightened my day and renewed my hope and faith in all that is good. I hope you have a wonderful birthday tomorrow and cannot wait till next years so Faith can celebrate it with you! You are such a true friend to Faith.

3 thoughts on “DAY 40– CHONY PICU – EVENING

  1. Joe,Sue, Faith and family,
    We are so sorry we didn’t know what was happening to your family. We read your whole blog and send you our prayers. We are spreading the word for more prayers from everyone we know. Faith you are a wonderful, special little girl and I know what a fighter you are!! If the kids need anything from the Pharmacy let us know and we can deliver it for you. Jess and Abby, you can always text Maggie if you need a ride from PJ or anything else. We think and pray for you everyday!
    The Miller family

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