Good Day/Bad Day – Hard to call the day, you decide. Here are the details, see yesterday’s post for details about the tests.

  • Cardiology decided that the “bubble test” aka agitated saline echo-cardiogram would not reveal any beneficial information. All of her standard echo’s were so good they can say with certainty there is no shunting.
  • The doctor from the pulmonary hypertension (PH) team also reviewed all of the previous echo-cardiograms and said absolutely no to pulmonary hypertension. Just a side note the doc who is now an attending on the PH team was training as a fellow back when Jonathan was here and remembers his case clearly, kinda cool and scary at the same time.
  • We cannot do a CT scan with contrast at this time because her kidneys are still recovering from sepsis and all the antibiotics she is on. Contrast would be too much of a shock to them and could cause failure. They are weighing the benefit of just a CT without contrast and what information that might contribute for the effort involved in getting one done.
  • The “gold standard” V-Q scan also is a big logistical challenge and it’s not clear right now if the benefits outweigh the risks.
  • Faith had a good morning getting her FiO2 (the amount of O2 the ventilator is providing) was all the way down to 30% when she got into one of her episodes where she could not recover and maintain her own O2 level. They had to go all the way back up to 100% FiO2 to get her to 90%. I can safely say we are now back down to 60% FiO2 and she is doing 95% so some good news.
  • From an infectious disease (ID) perspective the nasty bug is officially under control along with the fungal growth. There is still a persistent Staphylococcus epidermidis that is still not fully under control. She is also still having spiky fevers.

Tomorrow is a bit more of the wait and see game and to hear back from pulmonary on what they would like to do.

I would also like to say a quick welcome and thank you to the Down’s Syndrome (DS) Facebook group. I posted a link to this blog there last night in the hopes someone else might have had or heard of similar circumstances and might be able to help, if this is something specific do DS. They have almost 4,000 members so you never know.

3 thoughts on “DAY 29 – CPMC/CHONY PICU

  1. Joe, how are you keeping this all straight? Thank goodness your wife is a nurse and I think you are well on your way to a degree. Faith always seems to do things her own way and it is looking like this event isn’t any different. Keep well.

  2. He gives strength to the weary and increases the power of the weak. Even youths grow tired and weary, and young men stumble and fall; but those who hope in the Lord will renew their strength. They will soar on wings like an eagle; they will run and not grow weary, they will walk and not faint. — Isaiah 40:28-31

    Thinking of you Faith!!!!

  3. Still praying for Faith and your family. This must be so difficult for all of you. She is on my mind everyday.

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