DAY 4 – CPMC/CHONY PICU – 38-34-4

A better day than yesterday (not many things could make it worse).

Our friend Caroline, who is a nurse manager, spoke with the ICU director first thing this morning.  We met Caroline when she was the first nurse to care for Jonathan after coming out of heart surgery in super critical condition.  Though that time we each learned and taught each other a lot.  We have kept in touch with her.  She was almost as disappointed and upset as we were after leaving work yesterday. She participated in the intubation, preparing the crash cart medications in the event Faith went into cardiac arrest.

Dr. K, the ICU Director came down to Faith’s room this morning, stood at the end of her bed, looked at her and us and let us know in uncertain terms how dissatisfied he was with the situation.  He only returned from California Wed night. We had a long talk with him and he understood everything we had to say and was taken by surprise at some of the things we had experienced.

Here are the changes he promised and we have already seen:

  1. He will be point man for the team delivering her care, coordinating services and getting her what she needs and deserves.
  2. Pulmonology (Attending, Fellow & Resident) were up at her bedside and agreed that the FULL airway needed further examination via rigid bronchoscopy as even with the endotracheal tube in there is still some unusual noise lower in the trachea.
  3. Neurology has ordered an MRI to rule out two know contributors in Down Syndrome patients that may have neurological component in her respiratory issue.  The first is simple and all DS kids are screened for this in early childhood (Yes, Faith was at 3 and it was OK).  It’s called Atlantoaxial Instability.  Basically the first and second cervical vertibae (C1 & C2) can shift back and forth causing airway instability.  The second is something called Arnold–Chiari malformation (
  4. ENT Attending visited the bedside also today.  They want Neuro to clear her before they attempt any surgical interventions.  They will scope her again thoroughly without any steroids on board which have masked the problem in the past.  It will be done in the OR under controlled circumstances because they will need to take out the ET tube, scope and either leave it out or need to re-intubate based on findings.  He believes more and more it may be a problem in the larynx (no specifics yet).
  5. ENT has also contacted an outside expert with specialty in airway problems in children with Down’s Syndrome, he is away and will be back and in on Monday to see Faith and review what has been done.

Our confidence is almost restored that everything and anything is being done to find the RIGHT solution to fix the problem Faith has been struggling with for over a month.


“Our lives begin to end the day we become silent about things that matter.” – MLK Jr


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