Living on the Edge

and it is so not as glamours as the Aerosmith song. The constant worry and stress are really taking a toll on me, Kevin, the boys, shoot our whole families. I cannot stop watching the monitor when I am in C's room. I dread leaving her and I dread coming back to the hospital. Poor Kevin keeps telling me to stop watching the monitor but I am just scared.

While C was improving she has started to have issues with her heart rate again. She was placed on 2 different medicines to control the rate and arrhythmia she was in 5 days ago. As of 1am she was no longer holding a steady heart rate. The rhythm is still good but her actual heart rate (how fast/slow her heart beats) is all over the board. Apparently of the two problems to be dealing with right now, the heart rate issue is the better of the two but since the two go together this could start affecting the rhythm as well). Fortunately my mom is able to be here with me today as I have gotten no sleep, watching the monitor and all. Plus C was just cranky all last night and would not let me put her down. She is not feeling well at all. I just took her temp and she seems to be running a fever again (will have the nurse do it as well just to be sure). She seemed like she was getting better and kicking this cold but she is now getting worse. Not sure why. She has had two different blood work-ups for cultures and nothing has grown at all. She was on super heavy duty antibiotics for several days and is continuing on Omnicef just to be safe. I know that if it is a virus then the antibiotics will not do anything but I am really praying there has not been an infection set in since the last blood draw/urine sample.

Right now I do not have any plan of action as I have not spoken with any of the cardiologists yet. Hoping they will finish rounds here soon and take a look at her and let me know what the plan is. I know the doctors have mentioned before that we could change medicines and see if that works. I am really praying, and asking all of you to pray as well, that the medicines work. Right now the alternatives to treat this are very risky for her. The ablation is something the doctors can do if pressed but they really want to wait until she is bigger and older (and the success rate is not very high apparently). Everything with all this stuff really depends on her size. The bigger she is, the bigger her heart is, the better. I am so not willing to consider what will happen if the medicines do not work.

I am not trying to be an alarmist but C is still pretty sick. She can really use all the prayers she can get.

Thank you all so very much -