Slight Improvement - Elias Keeps Fighting!!

Elias got through the night with only a few episodes, which is good. He is really fighting this hard and slowly improving. The pneumonia no doubt makes things a little rougher for him, but he is impressing the medical staff with his resilience. He even opened his eyes briefly a few time and looked at us, and Katharine said she saw the corner of his mouth twitch up slightly. We accepted that as a smile. Although his condition is still labeled the same, we feel much better about how he is looking and recovering.

They want to try again later today or tomorrow to give pedialyte in his g-tube. They are waiting for approval from Ped Surgery that everything is good for them to proceed. We are a little nervous about the feeding into the stomach only because he has not been tested with feeds really since the major set back at the end of may. The trouble with that was they were trying to do three different things all at once (started feeding for the first, treatment of the PDA in heart, drastically reducing vent settings) and when things went horribly wrong they could not isolate what caused the problem. Here is a quick synopsis on why we are nervous about this. He has been fed OJ (Jejunal, just past the stomach) since the first problem in may, except for Monday night when his feeding tube came out. They slid it back in (which they should not have done because of esophagus repair, but that's a different rant) but placed it OG ( Orogastric, in the stomach) and actually started the feeds this way! Some one made a big mistake not referring to his chart to see it was to be OJ. Within 5 minutes Elias was spitting up milk, probably due to reflux. So the stomach right now does not have the best track record with Elias. This concern was recognized prior to Elias' surgery and the plan is to give him aggressive doses of reflux medicine in hope that will control it. If not there is a surgery (yes another surgery) they can do to help better manage it, but they will only do this if medicine does not work. So there is some anxiety and potential set backs, but we will not know until we try unfortunately. I think my greatest fear is that he might aspirate the feeds and with the existing pneumonia would really cause problems for him.

So we will continue to watch Elias fight through all of this as he has done so wonderfully this far. The way he his fighting this really remarkable and so inspiring. It made me remember how proud I was of him back in May after he came off the oscillator. I remembered the blog I wrote for him that day. I realized that day just how strong my son is and how special he is to us. I would like to close this entry with an excerpt from that blog:

There Goes My Hero ( A Father's Perspective)

When you become a parent you only want the world for your child. Katharine & I have been placed in a very unique situation. One that has tested our strength and resolve beyond its limits. Many have asked us how we seem to be handling everything so well. To be honest, it has to be faith. Through our Faith in God, family, friends, and each other, we are turning a tough situation into something acceptable. Even with all of these things working for us, I believe that Elias is what drives us day in and day out. We are so proud of him. He is showing resilience that few people know. Many of you have shared your stories in our conversations about how Elias has touched or inspired you in some way. It’s absolutely amazing the response he has received. He has certainly heightened my faith and inspired me to do everything I’m able to ensure he is able to choose his path. He has so many obstacles to overcome, but is doing so well in such a short time. Yes, he has had some struggles, but nothing worth fighting for is ever easy. I look at Elias, my son, everyday, and through all the breathing tubes I see him smile. I look in his eyes and hear him say 'I Love You'. I feel him try to grasp my finger, even though he can not, and hear him say 'I’m fighting all this Dad and one day I will grab that finger'. I watch him sleep and know that he is mustering up the strength and courage to wage another battle, some of which he will lose. But his heart, passion, and ability to bring so much joy to so many, regardless of the circumstances, make him more than a son to me. Elias is “My Hero!!” When I look down upon him I see that he is an ordinary boy with extraordinary faith, heart, & desire. Many may not understand considering the circumstances, but I consider myself truly privileged and blessed to have Elias as my son.