Disappointing Findings

Elias had another Bronchoscopy today and long story short the airway is not improved and still considered unstable and in Dr. Woods words, “down right scary.” They really can not figure out how Elias is thriving like he is. Basically, the vascular ring repair did not do even a fraction of what they had hoped for. We knew that was possible, but were hoping for the best. The trachea is still compressed significantly and of course there is the floppy tracheomalacia. Using the parenthesis symbols this is what a normal air way should be like if left is top and right is bottom: “()”  air flows through the middle. Elias’ airway looks like this “)(" air can not flow or is constricted. Add the Bronchomalacia a little lower towards the lung and things get ugly and out of control and takes very little to get Elias in trouble. In the case of yesterday’s episodes it was caused by an upper respiratory infection or virus of some kind. The cultures will continue to grow for 36 more hours, but the initial 24 hours does show white blood cells and negative gram rods. This more than likely is the early sign for an infection. As for the other times prior, well compression, floppiness, and unpredictable factors are likely the cause. That’s a fancy way of saying we do not know for sure and there is nothing we can do to prevent them from occurring. While much of what we just covered is almost review,  they were factors we already knew of, but we had hoped for a better outcome with the vascular ring release. The other disappointing factor is that there is really not much else we can do, but watch, wait and hope the compression and malacic areas mature and get stronger on their own. That is the really frustrating part to all this. The inability to explain or even prevent this from continuing to happen. We will always need to be at the ready 24/7 should Elias stop breathing again and that is the best that we can do.

If there is a bright side through all this, and we are really trying to find one, it is that the overall kind of sort of plan we were discussing Monday and it really will not change much. As we said they do not know how or why Elias is thriving like he is but we have to run with it and be cautious and vigilant to keep a watchful eye. We are going to continue the windows off the Si Pap. Tomorrow they hope to combine the two windows to create a daytime scenario without intervention and a night time usage of the Si Pap. He will also be getting pressure support on top of that, which is more like Bi Pap. The other component we are going to attempt is something Dr. Wood has had some success with in other extremely complex airways he has worked with. That is the use of a one-way valve or the passy-muir valve. We had tried this in the past but he is hoping the conditions inside have changed enough to have more of an impact. This will create a natural pressure to assist holding the airway open when Elias is off the Ventilator. It will hopefully provide enough edge to keep him off the ventilator for longer stretches during the day. In terms of when all this will happen to a point where Elias can return home is still very much in the air. It will be at least a few weeks. That too was a morale buster. I suppose much of this frustration stems from the feeling of going backwards almost to the point of guilt. We came into this without the need for any mechanical intervention and now we are being absorbed by the concept. What did we do? I think the resonating theme of all this is that Elias is going to have the tracheostomy much longer than we had originally thought. That too is difficult to come to terms with. The decisions we made did not involve all this. While we know it is not the end of the world it certainly changes the dynamics of things overall and the impact it has on Elias.

Despite the grim and disappointing news Elias did very well through the procedure. They also changed the trach tube back to a cuffless trach, Thank God! He recovered well and quickly and was butt-bouncing on his crib and moving all over within hours. That child amazes us to the very core. He amazes the doctors and of course family and dear friends. We have said it before, but today was one of those day that his terrific spirit helps us overcome the news and pushes away the negativity enough not to allow it to overcome us. I thank God everyday for allowing Elias the ability to show us his spirit while raising ours, especially when they do not feel like doing so. Mommy & Daddy Love you Elias and we are so sorry that you have to suffer and endure all of this.