Elias & The Terrible Horrible No Good Very Bad Day

Trying to make light of the day I chose to title this update after the children's book, Alexander & The Terrible Horrible No Good Very Bad Day. Today was one of those days for poor Elias. Unfortunately, overnight he took a major step backward. As the doctor explained to us when we arrived, "Elias' lungs are very sick and we do not know why." This was dreadful news especially since we were hoping for extubation. Instead we walked in to see his vent setting at 60% (up from 20) and the oxygen level at 100%. Overnight he began to DeSat (low blood oxygen level concentration) which means carbon dioxide is not being released as it should. It was at a level where they had to increase the vent to push it out. This meant no extubation was certain for today. The other problem is he started the retaining of fluid around the lungs and became swollen again. X-rays confirmed, but the issue now was it is a dense area throughout the pulmonary area and not layered as they would expect to see with the Chylothorax. Feeding him was the only way to tell if the Chylothorax had cleared and we expected to see the fluid and swelling, but not as it appears in the x-rays. So the doctors are puzzled, but there is yet another piece of this mysterious puzzle. The medicine for the PDA in the heart does carry some risk of bleeding and hemorrhaging and it is in the pulmonary portion of the heart. All of these things could have contributed to his reaction, but since they were so relatively close together it cannot be isolated to what exactly caused the issues. This created yet another problem for the doctors to ponder. Basically, treat the symptoms, stabilize, reevaluate, & start over. Once that was determined, tests needed to be done to chose the medication. After the medication was ordered Elias decided he didn't want to play nice anymore. He began to DeSat again, breathing very rapidly, and then his heart rate was very erratic and declining. One of the doctors walked in noticed the levels, listened through the stethoscope and quickly started bagging him. We were talking with the social worker by the bedside and saw what was happening, but it wasn't really registering in our heads that Elias was in trouble....until the words "we need an oscillator here now" came out of the doctor's mouth. We left the room and waited for about 30 minutes. The doctors came in and explained to us that Elias was now on an oscillator which is designed to take over breathing functions 100%. This was an attempt to calm him down and stabilize the blood oxygen level. We were allowed back into the room and it was a sight that brought tears to our eyes. We felt so helpless and he looked so miserable. While we sat at his bedside 2 of the nurses were commenting on how hard he was fighting. Yes we know he is and we are proud of him, however this was NOT the time for him to chose to fight. Him trying to fight the oscillator and take breaths on his own, while noble and inspiring was not the best thing for him to be doing. The decision was made to increase the fentanyl to a high enough dose to essentially paralyze him and let the oscillator do its job. This of course made him lifeless looking and completely opposite what he was just a few days before (IE; the video). It was a very long and exhausting day, but we were able to leave out of there with a baby step of positive fortune. He was showing signs of becoming more stable. We are not sure what the next few days will bring, but we have faith that he will overcome yet another obstacle. All the nurses in the NICU warned us it always seems to be 2 steps forward 3 steps back, but you always end up one step closer to the door at the end of the day.

We are sorry to have to bring you such a dramatic update, especially after that wonderful video. Today was a very difficult day to experience, one filled with heartache and helplessness. We remain strong, somehow...mainly through faith, and we have faith that he will pull through all of this like the champ he is. We know you all will keep Elias in your thoughts & prayers. God Bless & Goodnight.


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