Amy has spent almost all day at the hospital and has not been able to post an update. So, it's Charlotte (Amy's mom) here again!
It's been a full day for Hope - she had an echo, an ultrasound, and bloodwork three times!! Twice from her head (one was a failed attempt) and once from her neck. After the failed attempt to get a good vein that wouldn't clot off shortly after they got it, a doctor was called in who apparently has an unbeaten track record in getting blood. He used to be a veterinarian and used to get blood samples from birds so even the most challenging patient (like Hope!) is no problem for him! He was literally in and out of the room in 30 seconds! Wish he could come every time she needs blood!!
The extra bloodwork was necessary because, at the end of the day, they informed us that they were doing the heart catheter tomorrow. Previously, we were told that they wanted to get her stomach issues all sorted out because it may result in an inaccurate read of her pressures on the heart cath. Apparently, that thinking has changed and she is scheduled in the third slot for tomorrow, which means some time around noon. We were told that the only snag would be if there wasn't a bed available in the PICU for her after the cath. After her bad reaction to the MRI, they are a little nervous to just take her back to the ward and would like to monitor her closely for several hours afterwards just to make sure she is okay.
She was taken off oxygen today and seems to be tolerating that well. Her protein levels have come up to the lower end of normal range, and she had lost weight since yesterday so the docs were pleased that, even though they still don't have a diagnosis, the treatment seems to be bringing some gradual improvement in her symptoms (the weight loss means the diuretics are working).
We are all very anxious for the results of the heart catheterization, as this will be the deciding factor on whether or not she is a good candidate for the Glenn surgery and if so, when that will be. Please join us in praying that the procedure will go very well and that there will be no complications whatsoever. Pray that the results will be good and show that Hope is a perfect candidate for her 2nd surgery and that the timing for that surgery will be at the exact time that is best for Hope's little body. We know God's timing is perfect and so, we look to Him for the outcome and lean on His wisdom. We are so grateful that He sees the big picture, even when it's hard for all of us to navigate through the fog of the "unknown".