Freedom

We are home again after our latest hospital adventure. On Tuesday morning we arrived bright and early for his surgery to insert his "G-tube" - which allows us to feed Declan directly into his stomach. We've been looking forward to this for a long time. We've become very weary from constantly putting his NG tubes back in after he throws it up out of his mouth and we feel so bad for the little guy as he cries every time he throws it up.  As part of the procedure, Declan was having a fundoplication , where they wrap the upper portion around the stomach around the esophagus to help prevent throwing up. So we were happy to be coming in to the hospital to finally have the procedures done. The operation was only a couple of hours. When we saw him in his recovery room, back in the PICU, he was still puffy, but nothing like after the two  heart surgeries. He was a bit agitated, but much more manageable than his last recovery after his Glenn.

Another point of our hospital admission was to see if we could wean him off of the oxygen. He has been attached to oxygen since our last hospital discharge because his unaided breathing resulted in a saturation that was still to low. So we were hoping that his lung bed pressures would have improved and we could test him without the oxygen. The first day of his recovery they dropped his oxygen from 1 liter down to 1/2 liter. He responded wonderfully so they dropped it down to 1/4 liter. He initially responded well, but then that night his sats dropped again so we had to keep him at about 1/3 liter which kept his saturations steady.

Wednesday and Thursday were spent monitoring him - managing his pain, watching his incision, and watching his oxygen saturation. We spoke to the doctors and if his numbers didn't improve, we could potentially be looking at a catheter next Tuesday to test his heart and lungs in search for some answers. That would mean more monitoring and a lengthened hospital stay - possibly to next Wednesday or Thursday. So on Thursday afternoon when they wanted to wean him down to zero again and see how he would do, we were a bit nervous. Because if he didn't respond we knew what would happen. So we watched as they moved the dial down to zero. We watched the monitor waiting for the number to drop but it didn't! He stayed within his acceptable range! We were elated! We could keep the tubing off of his face. It was so nice to have access to his cheeks again. We really haven't had him "cheek free". He's always had tape on his cheeks from his NG tube and then again from the nasal cannula.

Friday was spent in a sense of euphoria. His sats were great, we could see and kiss and touch his cheeks, and he wasn't throwing up.  If felt like the beginning of a new Declan. He hadn't thrown up since the surgery. I can't explain how good it feels not to be changing his clothes on an hourly basis. Just enjoying him as opposed to anticipating the next spit up; and watching his entire facial expressions, unobstructed by tape.   It was the closest feeling I've had to waking up as a kid on  Christmas morning. We feel so blessed that he has come so far. We still have to be careful with his G-tube coming out of his stomach, but it feels completely different- not puking all the time. Just before discharge, a musical therapist came and sang some songs with Declan. We recorded some of it for anyone who might want to see. (Although it doesn't work on Iphones for some reason) But wanted to share that moment with everybody. We are now home again enjoying Declan one step healthier and one step farther in  his progression.  We love you all!