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.
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"Anyone want to nominate me for mother of the year?!" .... hummmm.. YES! I DO!! Nicole, what you are doing for Lucy and your family is amazing. It has to feel overwhelming and impossible at times, but your dedication is superhuman. In fact, I know you're only able to do any of this b/c of the Lord. Don't beat yourself up at ALL. Even for that "mishap", God has His plan. Let me know if there's anything I can do for you on Friday. Praying!
Susan
from Cora to Lucy. i hope that you feel better soon . merry chrimas love Cora.
Wow none of this sounds like fun.
I did just want to tell you that I have had numerous central lines myself. I don't talk about my medical problems but I have had these and everything was okay with the first couple that I had. Then I went and had to get a new one and I was okay for a couple days and then all of the sudden I felt like there was something wrong with my heart. And I felt exhausted. Anyway I ended up going into the hospital and was diagnosed with SVT (tachycardia)I knew that this was from the new line I had placed. The doctors did not think this was the case. So eventually after a couple more days I asked them to take this line out and put a new one in. They agreed even though they still didn't think it was causing problems. When they took it out my SVT went away. I waited a day or two and had a new one placed. This new one was fine and I didn't have problems with it. I don't know the reason for this or why it happened and the doctors still do not think that it was the line. The placement of that one looked great on the x-ray but I know it was the line. I could just feel something wasn't right in me when I got this one placed. I don't know if this would be Lucys problem or not but I just thought I would tell you my personal experience and you could keep that in the back of your head and if they can't find what the cause is this might be something to look into.
Anyway we pray for sweet Lucy everyday. We hope the doctors can figure some of this out soon!!
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