doctor visit

Well it's 11:00 pm and I am just sitting down... whew. Since Ella's been placed on oxygen she has been in need of 24 hour care. She is hooked up to a machine that monitors her oxygen levels and her heart rate. This machine alarms loud and often... brings back memories of the constant beeping while in the hospital. This new way of living has been a very hard adjustment for all of us. Ella does not handle the noise piece very well and is constantly rubbing it out of place, Jon and I are having to take shifts all throughout the night. One of us watches Ella and puts her to bed, we stay up as long as we can (usually about 5 hours) then we wake up the other to switch... although we have only been on this new schedule 3 days it has already taken it's toll. I realize you all did not come to read about us, but rather Ella, so I will move on to her doctor visit. So we went to Ella's cardiologist this afternoon, she had an EKG and an echo cardiogram to determine what is causing her stats to drop. Her cardiologist said that when she originally had her shunt put in, it was a little large and she needed to grow into it. Because of the size, it was causing too much fluid so they had her on a medicine to make her pee. About a month ago they upped her dose of it. Well after the check up today they said that she has completely grown into her shunt and may in fact be out growing it already. Also it has noticeably narrowed. So they are having us stop the medicine that makes her pee, and also one of her other medicines. Leaving only two daily meds! Until the meds have enough time to get out of her system she will have to remain on the oxygen. This may have no effect on her stats, but it's worth a shot! We are going to be talking to the cardiologist on Wednesday to give a report on how she does without the meds. I am thinking she is a little dehydrated and stopping the meds that make her pee should help that as well. Right now we are trying to get Ella to at least 4 months before doing her glenn surgery, but she may not be able to wait that long. Basically we will know more in a few days... we are hoping that stopping these two meds will buy her enough time to have the surgery at the best possible weight/age. If this doesn't work, we will be going down to Dallas very soon. At that point, they will either do a cath surgery to postpone the glenn and if that doesn't work or if they feel she is ready for the glenn they may go ahead and do it. Please be praying for GOD'S TIMING in all of this, sometimes it doesn't seem right to us or the doctors, but we know God is in complete control.