Today was Charles's first outpatient appointment. We went to Good Samaritan in Brockton to see Dr. Rhodes. I had a few questions for them concerning his weight gain, the pulmicort, etc. They told me that Charlie has a heart murmur now. They said because his left ventricle is damaged, Charlie's heart isn't squeezing as well as it should be, and blood is probably backing up. He called it mitral regurgitation. As a result, they are doubling his dose of Captopril, Charlie's "favorite" medicine. They gave me a prescription for a stethoscope so I can listen to his heart and see if there is any arrhythmia since they are taking him off of the amiodarone due to long Q and T waves(?) on his EKG. They think the amiodarone is responsible for it. He now weighs 12lbs 9ozs which is a big improvement since his last weight check last week where he weighed 11lbs 7ozs. He still looks so scrawny. They also took him off of the pulmicort neb because he sounds a lot better than before. (If he starts sounding worse, I always have it in the closet.) Besides that, he is scheduled for an echo next Friday at Children's Hospital. (I thought it was going to be a lot longer before I ever went back there again!) He follows up with Dr. Rhodes and the electrophysiology team after the echo. They said his fussiness is either teething or constipation due to the meds, but his poop isn't hard so I think Charlie may be teething! That explains why he is always chewing on his fingers. lol Well, I am going to call Masshealth and Enos Medical Supply and see what I have to do to get syringes, a stethoscope, and diapers since he is on two diuretics.
ETA: Charlie's Spaghetti Supper is tomorrow at the West End Grill in New Bedford, MA on Rockdale Ave. Call Pam or Trace to get more info if you're interested! 7742027041 5086176425 7745351810
That sounds like a good appointment. :-) Weight gain is good. And they will put some of Charlie's meds up for a while as he gains weight before they start to reduce them so don't see an increase as a backward step. Good luck for the ECHO on Friday.
ReplyDeleteBest wishes
Jackie
www.myem.blogspot.com
Thank you. :) I am more concerned about the murmur than the increase in meds. He didn't have one in the hospital so that seems like a step backwards.
ReplyDeleteIt will probably be from the flow through the mitral valve. Before they get diagnosed the bit of heart muscle in that area doesn't get good blood flow and it means the valve doesn't work very well. Once his heart muscle is less 'floppy' and working a bit better the valve function will improve and the murmur will lessen. Emily has a slight mitral murmur still and a big pulmonary murmur because her surgery wasn't a direct re-implantation of the coronary. She has her coronary crossing the pulmonary artery which disturbs the flow and causes the murmur.
ReplyDeleteKeep taking one day at a time :-)
Jackie x