A Busy Month!

On Wednesday, the 11th, Christopher was not eating anything for me, so after calling some doctors, I took him up to the ER at Primary Childrens, thinking that they were just going to show me how to place an NG tube we would be right back home to celebrate Matt's birthday.  That didn't happen.  As I was placing the tube, the cardiologist came in the room and told me to hold off, because he wanted to run some tests to make sure the eating problems weren't masking a heart problem.  He had an EKG and another echo, and after clearing his heart they decided to admit him to see if they could figure out a way to get him to eat and gain weight. I got him to his room and settled him in, and by that time it was pretty late, so I headed home since I was getting a sore throat.  I had a nice little cold for a few days and the doctor asked me not to hold him, so we just went up after Matt got home from work and he held him for me.  They tried to feed him, but he kept resisting and throwing up, so the NJ tube was the only option.  He was put back on continuous feeds that way, then a speech therapist came to see him and she asked the doctor to do an endoscopy to see if his vocal chords were working, because she was pretty sure he was silently aspirating.  Well, she was right!  The endoscopy showed that his left vocal chord is paralyzed in an open position.  If you recall, when he had his heart surgery he had his aorta repaired because it was too small.  Any time the aortic arch is operated on, the nerve that serves the vocal chords can (and usually does, to some extent) get injured, because the nerve goes up and under the aortic arch.  It usually heals in time, but if it is permanently damaged then the right vocal chord will just take over, and the left vocal chord can be injected with something so that it closes.  This also explains why he has had some difficulty swallowing, because he probably has a loss of sensation on the left side of his throat, and the muscles on that side are also affected.  Add to that his reflux problem, and you have a baby who develops an aversion to eating, because it gets into his lungs!  So, we didn't feed him anything orally for a week to give his lungs a chance to recover.  I had a speech therapist show me how to position him when it was time for him to eat again, and he remembered how to do it just fine.  He started off very slowly, but he's working his way back up very nicely.  After a few days of eating orally again and a positive trend of weight gain, we got to bring him home on Monday.  By that time, the cold had moved through everyone in the family, so that was pretty good timing!  He is off the lasix now, but they added erithromycin to his meds because in low doses it improves motility. (Did you know that?  I didn't know that!)

Here is a view of the mountains I got to pass every day on my drive to the hospital.  We finally got a decent snow storm, and it was beautiful!

Here's a shot of all the equipment we have right now.  It's really not too bad, but he's not easy to just move from room to room.  Don't worry, I hold him a lot.

The sisters couldn't be happier to have their brother (and mom!) home again.  They couldn't wait to hold him and take pictures with him.

 

Doesn't he look so grown up in this picture?  Needless to say, I am head-over-heels in love with this little boy.