Post OR update

The OR went well today, they were successful in sedating her and bringing her up to the level of consciousness they wanted to perform the scope and tests of her vocal chords.

The MRI showed nothing out of the ordinary, no surprise here and that’s a good thing.

The scope did find some significant ulcerations just below her vocal chords. The cause is most likely the EndoTracheal (ET) tubes that had been in place initially.

The PLAN:

Depends who you speak to:

ENT: Conservative approach of steroids & antibiotics. It has been proven before that the steroids reduce the inflammation, allow her to breathe and time to heal. I’m pretty sure that’s what us crazy uninformed parents were screaming about last Tuesday.

ICU: They are already talking about a tracheotomy so that they can bypass that whole area and allow it to heal. No one has convinced us yet of it’s benefits over risks yet, not to mention how we plan on reversing it one day.

The primary doctor coordinating her care will be back in tomorrow to discuss all with us and give us a chance to voice our concerns.

Sorry if this is a bit disjointed and weak tonight, the stress of the past week is getting to Sue and I. Sleep doesn’t seem to help and the conflicts we still seem to have with some of the ICU staff really drain our energy.

2:15 on the way to OR

4:39 out of OR. Back on vent more details later. Positive

Weekend Recap

• Friday: Bedside bronchoscopy found narrowing of the trachea caused by inflammation. The most likely cause is GERD (acid reflux). We the parents had posited that there may be more going on than upper airway obstruction but what do we know.
• Saturday & Sunday: Many attempts to get an MRI, finally did Sunday night at 5PM. We won’t know the results until either late tonight or Monday morning.

Monday

The plan for Monday is a trip to the OR. The “scheduled” time in 1:40PM. They will be extubating Faith so that they can pass another scope the full length of the airway. The bronchoscopy was limited because the endo-tracheal tube was in place. The main focus will be on the vocal chords and larynx. The hope is to find something that is fixable via surgery or otherwise.

There are a few outcomes based on tomorrows diagnostic testing:

1. After successful scoping they will intubate again and Faith will return back on the ventilator.
2. After successful scoping they will be able to keep Faith extubated and she will breathe on her own.
3. After successful scoping they will see something they can fix surgically and schedule a fix for a future date.
4. After successful scoping they will not find anything they can fix and plan a tracheotomy for a future date to ensure an airway.

I will update you all tomorrow night when we have good news.

Follow Faith’s journey back to health https://www.faithsfolly.com

Had a bedside bronchoscopy this afternoon. They found the trachea to be narrower than what they would expect for a child her age and size. The belief is it from reflux causing irritation of the trachea (windpipe).

She was supposed to have an MRI at 3PM, then 5PM, then 8PM but emergencies prevented it. It should be done tomorrow, they run a 24/7 MRI. The problem is that since she is on a ventilator it takes many staff to transport her over there and they must remain with her. An emergency (kid going bad) in another part of the ICU demands their attention right now. We are fine with that, been on both ends of that situation and resources go where they are needed most. We are not expecting much from the MRI findings anyway.

Faith has a date in the OR on Monday with two ENT surgeons who will be extubating and viewing her upper airway and all the other parts the bronchoscopy could not see. The surgeon who is most expert in airway issues along with their surgical correction will be there along with the head of the dept. to perform the test.

We expect her to be re-intubated and returned to the ventilator until about Thursday of next week. It’s providing her body and lungs a chance to recover and heal. You must remember in addition to the airway issues she also still has those pulmonary emboli.

It “should” be a very quiet weekend, I’ll only update if something significant occurs (good or bad), otherwise Monday after we know what’s going on.

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 (http://en.wikipedia.org/wiki/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