Brace yourself for an information-heavy post -- probably more than you ever wanted to know!
Today we saw Barrett's pediatriac cardiologist, pediatrician, and had blood work at the lab. Whew!
The cardiology appoinment was better that I even hoped! His EKG did not show WPW this time (Wolff Parkinson White syndrome; a condition that showed up on his previous EKGs -- it scares the daylights out of me because it can cause sudden cardiac death where the patient can just drop dead without much warning or time to stop it). The fact that it did not show up this time may mean that his previous WPW was related to the severity of his SVT and cardiomyopathy, not something he will have all the time. Horray! The echocardiogram showed that his heart is pumping blood in the normal range too~~ All-around, it was a great visit. Dr. Brumund upped the dosage of his heart medicines, but will start weaning him off the medicines at 12m with a goal of having him completely off the medicines by 15m. Holy cow. This prospect also scares me because it seems like his heart will no longer be "protected" by the medicines. But, the fact the doctor wants to try weaning him off is a good sign for his overall heart health, so I'm focusing on that.
At the pediatrician appointment, I expected to learn than he still had ear infections to explain the 101 degree fever. No so. It must be some other fever-inducing malady, so Dr. Bankston ordered bloodwork to check him out, since he needed bloodwork for Dr. Brumund anyway (checking for thryoid and liver damage, caused by his heart medicines). Off to the lab...
I thought we would be in and out, no problem. Man, was I WRONG! They took SIX VIALS of blood via finger prick, drop by agonizingly-tiny little drop. Barrett was inconsolable, poor thing. I haven't heard him cry like that since the ER, when they were pricking him everywhere for an IV. I kept asking why they couldn't take the blood from a vein, but apparently those are hard to find on infants. Sheesh. He was in fits for 23 minutes.
Barrett is now recuperating with (hopefully) a long nap. Poor little guy.
I can honestly say that after having been through all that we have with Barrett's heart complications, I don't take my time with him for granted. It seems dramatic, but days like today really remind me that he is a miracle baby. He is so lucky to have such a wonderful team of smart, proactive, and compassionate doctors and nurses. Although it is an ongoing process, his prognosis is 180 degrees different from before -- he is going to be okay~~ and I couldn't be happier.
Barrett's blood work for Dr. Brumund did NOT show any liver or thryoid damage caused by his heart medicines! Who-hoo!
He's still sporting a fever, so the pediatrician prescribed a stronger antibiotic. Fingers crossed this one works...he's had a fever for 3 weeks now!