Elias Is In Recovery

Elias has returned from the operating room and recovering now. The surgery was a little over 3 hours. His surgeon came to tell us how things went. It did not go quite as smooth as they would have hoped. Elias was up and down with his vitals and generally unstable. They were able to get through all the operations, but did not do the bronchoscopy. The anesthesiologist was not comfortable with the way Elias' vitals fluctuated and his bronchospasms (clamping down, irregular respiratory) that he would tolerate the scope. Of all his procedures that was the least critical, it was more like since we have him down there.

His esophagus was indeed very tight and needed the dilation. He used a little larger balloon this time and held it open for a little longer. The left a small OG tube (feeding tube to the stomach) in place acting as a stint. Dr. Stuart was a little concerned about how aggressive the stricture is acting and does not want to lose his path. He think it will need to stay in for 2 or 3 more dilations.

The gastrostomy went in without too much issue. Elias' stomach is so tiny, that when he ran the tube to test it seemed to go direct to the small intestine. He check things a few times and is confident that because of the stomach size it is not staying in the stomach for long. It is something we will need to watch and ensure it is placed correctly to the stomach and not the upper small intestine, but they are confident things are fine.

Finally, the tracheostomy was completed. Dr Stuart said that his upper trachea looks great, rings intact and strong even though they were small. This confirmed the thinking that the bottom area is what seems to be causing his problems. He is still breathing a little tighter than they would like after surgery, but he should stabilize and relax that soon. They have the vent hooked to the trach tube with his settings at 100% oxygen with a rate of 40. He is still heavily sedated with no movement. He looks more like a baby doll than a real baby when he is like this, it is hard to see him like that. They are going to start fluids, lipids & TPN now with a fentanyl drip for pain management. He will have a very busy night as they work to stabilize & monitor his condition. The next few days they told us will be a little rough, but he should slowly recover nicely.

Seeing his face for the first time without anything on it was pure joy. He looks exactly like his Daddy!! We did not take any photos tonight mainly because it is hard to see him frozen like that, but it was a touch crowded in his room with all kinds of staff coming and going. It will be that way the rest of the night for him...thank god for sedation! We will try for photos for everyone tomorrow. Today has certainly been the most difficult day of our journey. We still have to wait a few days until things are certain and stable. There was so much anxiety, doubt, and fear with this surgery that was very different than any of the others. There was that sick to your stomach & all in knots feeling. Feeling like you just wanted to breakdown at any given moment (and Christine we did take a few moments to let it out). It was the longest wait we have ever endured. It is a huge relief to have this past us and we can work with the challenges that await. Thank you all for the calls, emails, comments, thoughts & prayers. You have no idea how great it is to know so many people care and are concerned about our son. You are all wonderful and contribute to our and Elias' strength. It is very difficult to express our deep appreciation to all of you and all of Elias medical support, especially his nurses. They are truly a special group and show so much compassion towards him and to us. Tomorrow will be another long day so it is off to rest...good night everyone.