** THE WEBSITE WILL BE DOWN TONIGHT FOR EXTENDED EMERGENCY MAINTENANCE FROM ABOUT THU 10PM EST UNTIL FRI 8AM EST **

• NO Extubation today 🙁
  • She is not ready. She will probably not be ready until after the weekend. Very often when being mechanically ventilated and laying around in bed you can accumulate more fluid that you put out. She has a bit of fluid overload and one of the most affected places is the lungs. They are giving her diuretics to assist in peeing it all out but it takes time.
  • Clinically she is showing signs of someone who still needs ventilator assistance (increased pressure & oxygen levels).
  • If she were only against one airway issue it might be advisable to attempt. She has both upper-airway issues that should/might be better and then is still dealing with pulmonary emboli in both lungs. The emboli alone would increase someones need for oxygen, the narrowing of the airways makes that harder to do.
  • We all agree that giving her the optimum circumstances is what we all want for her to be able to be successfully removed from the ventilator. Failure is not an option. We are not there yet. Time and patience will help her heal the best.
• Mom’s getting a break this weekend. Dad will be staying with Faith on both Friday & Saturday night. Mom is beyond tired and needs a bit of time away from the insanity of an ICU.
• Not much else happening. I’m going to try to get a copy of her hematology report by the end of the weekend so we know if the blood clots were a fluke or perhaps there for some time and linked to genetics.

A little late due to technical problems with the blog server (imagine that happening to us).

Faith & Sue had a very quiet and good day.  I was unable to see both as I was with Jonathan who had two doctors appointments in NJ to go to.

On Thursday both Abbey & Jessie will accompany me into the city to see their sister, they have Wed & Thu of this week off.  It should be a busy day as the plan is to extubate Faith to remove her from the ventilator.

Hopefully Thursday will go well and I will have more good news.

Every cloud has its silver lining but it is sometimes a little difficult to get it to the mint.
— Don Marquis

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.