More stuff..

Okay, where to start...The cardiologist has a couple of theories. One is that her pulmonary edema is being caused by too much blood flow to her lungs. He thinks this because the past several days of diuretics should have helped by now if it was just an isolated thing, caused by the IV fluids given on Wednesday. This leads him to the next theory. Remember the CCAM (chest mass) that was diagnosed at the very beginning of this crazy life of hers? Well, prenatally, it appeared that it took up all of her right lung (which consists of 3 lobes) and squished all of her other organs (left lung and heart). After she was born, she had so many other issues, all they said was that it was "insignificant" at that time. He thinks that the CCAM never allowed her right lung to develop properly (something we feared prenatally). So, all this blood flow going to her lungs... if she has little to no lung tissue in her right lung, then it all goes to her left lung (which consists of 2 lobes). Clearly, this is overloading it. So, she needs to have a contrast CT scan of her chest. They tried today - but the IV stopped working. They put the IV in at 1pm and by 4pm it wasn't working. This was the 3rd IV in 24 hours! Having to stand by while they work to find a vein, and then try to stick it, is absolute agony for me. It makes me want to scoop her up and take her home AMA (against medical advice). So, no CT done. They need the CT information to help them determine what to do. And to make matters worse, they need an IV to give her Vancomycin just in case the positive blood culture is for real. Her next dose was due at 6pm tonight. I told one of her cardiologists that I just couldn't take them sticking her again tonight. Oh, and I forgot to mention that they also have to do another heart cath to see if putting in a plug to reduce the blood flow to her lungs helps. When they do that, they have to use a central line, which stays in better and longer. My suggestion was to wait until Wednesday (when the heart cath is scheduled) and do the CT at the same time. Especially since they said that they forgot to mention that she needs to be sedated for the CT scan. But, with her blood flow, the dye has to be injected in the upper body and the central line is usually done in the groin area. Oh, and they need the CT info before doing the heart cath. So, since it was the evening, no central line can be done tonight. So, luckily, the docs agreed that she will just have to skip the Vancomycin for tonight until we can figure this out tomorrow. Now, to add to the agony (which I am sure is what you feel after reading this), in order to put in a central line, she has to be sedated. In order to sedate her, they need an IV. Do you see how frustrating this is? Are you feeling my pain yet? I think they are going to have to put an IV in her scalp again. That worked last time and although the IV didn't stay in for long - it was in long enough to sedate her. Well, clearly, no plastic surgery appointment tomorrow. We are here for the week. I had to call and reschedule it. And she was supposed to get her helmet on Wednesday. Luckily, Christina is so good to us. She is going to bring it to the hospital, mark it up and then take it back to her office to cut it. So, hopefully we'll make some progress on that. Well, I gotta go. Please keep our sweet babe in your prayers. She is really something special. After all the sticking, she still smiles. Take care,Christy