Today was filled with even more appointments, this time at DuPont. Last Thursday when we met with Dr. R it was determined that we needed to see Lucy’s cardiologist a.s.a.p. We received a call yesterday saying that they could see Lucy today at 1:30. I know, I know, we are gluten for punishment. Two days in a row where our girly had to forgo her typical four hour nap, it has been rough, and not just on her. However, seeing cardiology was of the utmost importance so we took it. Lucy has been dealing with tachycardia since the beginning of November, her average heart rate is in the 160’s, much higher than the average 33 month old’s heart rate. Her dusky blue spells and mottling have only increased and her pulse ox numbers are just plain crazy. We had a repeat EKG and echo today because it is apparent that something has clearly changed since her last set of tests in October. On exam Dr, B, Lucy’s cardiologist, detected a very loud murmur when Lucy was upright, but when she was laying down she was unable to detect it. She told us that this could be because Lucy is anemic, apparently this type of murmur is a symptom of anemia.
Lucy’s EKG showed her to be tachycardic, but thankfully her echo was normal . Dr. B agrees with Dr. R that Lucy’s cardiac issues are related to her autonomic dysfunction, and not her heart muscle per say. She is concerned that Lucy’s heart muscle is tiring out, as some of Lucy’s lab work is indicated this. She is describing Lucy as having sinus taychcardia. She is monitoring Lucy’s heart rates over the next 24 hours with a Holter Monitor. When the results are back, she and Dr. R will discuss what the next steps will be.
As if we have not had enough medical appointments, we had an urgent need to go back to interventional radiology (IR) to attempt to fix Lucy’s J- tube. Last night we were unable to push in or pull back anything with Lucy’s tube. I spoke with Dr. R this morning about this and all of our appointments yesterday, and he put the orders into IR today. Fixing the tube was no longer an option when, while trying to transfer my baby to the IR table with all of her numerous tubes and wires hanging off of her body, I accidently snagged her J-tube extension on her wheelchair and pulled the whole thing out. Anyone want to nominate me for mother of the year? We had to go ahead and replace the tube. Drew had never been through a tube placement before, and for good reason. Let’s just say that he did well for the most part, but had an encounter with the floor that left him needing some medical attention himself.
It’s late and we are tired, too tired to go into detail about our day at CHOP. I will write later about those appointments. Thanks as always for your thoughts and prayers.