Faith had a quiet night & day. We know she doesn’t like laying on her left side as her “breathing” isn’t as good as when she is in other positions. We have already wrote on her leg with Sharpie so that no one accidentally takes a BP, starts and IV or draws blood from it because of the clot. Sue now suggested we put a “This End UP” on her left side, these are the things we think of as we sit watching her breathe.

THE PLAN!

Sue spoke with Dr. K. today who is coordinating all of Faith’s care now. He cleared up the mus-communication that the ICU doc had last night with ENT about the urgent need for a tracheotomy. There was none and once again those who have been with her all along had the story right. It’s scary how a game of telephone among medical professionals can have some rather unexpected consequences.

• Faith will be on IVsteroids (Decadron) and antibiotics for about a week.
• The first likely attempt to extubate would be on Thursday. We are hopeful it will be successful so she will be once again breathing on her own.
• She is heavily sedated and medically paralyzed right now so she can be ventilated without fighting it nor causing more irritation and damage to her windpipe with all the moving she does when not out cold.
• There will be a team meeting to ensure that all principles are aware of the plan so we do not continue to have these schizophrenic episodes.
• Here is some more information on what they believe the root cause of the problem is http://www.mayoclinic.com/health/vocal-cord-paralysis/DS00670 more correctly her’s is more weakness than paralysis because of the irritation in the area where the nerve bundles combine and connect to the vocal cords.
• She has also started on a new acid controller to get better control over her GERD (acid reflux) which has been causing irritation and inflammation also.
• TIME, TIME, TIME to heal everything that has been poked, prodded and irritated over the past weeks.

We remain optimistic that a non-surgical approach will be all that is necessary. It’s always better to fully explore conservative approaches before going radical. We know though in the end we are only given one airway and it needs to work all the time.

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