Today was split, the morning was not very good, and the afternoon was not very bad. Hope's PICC line continued to leak and was no longer useable at all. They had to pull the line and in doing so, found that it was no longer even in her vein. After the line was pulled, her leg was found to be leathery and firm. Please pray that this fluid would quickly leave her body and not cause any damage. The cardiologist, who also does heart caths and is great with IV's, tried to get an IV on Hope 6 times. None of them were successful and Hope fell asleep in exhaustion when they finally gave up.
At noon an anesthetist was brought in to attempt an IV. He managed to get one in Hope's right arm on his second attempt. They began running fluids for a couple of hours and then started her IV antibiotics. After a mere 3 hours, it was clear that the IV was failing and the line was pulled. We are now without access to Hope's body and we know that access if extremely difficult to find.
However, the afternoon was amazing. For the first time since we arrived in Edmonton, Hope was settled. She has only been happy while sleeping for the last two weeks. It makes me wonder if the PICC line was causing her pain and making her uncomfortable. I am praying she will not have any lines put it and that they wouldn't be necessary. She seems to be so much happier without something sticking out of her body!
It takes 48 hours for the blood cultures to truly come back negative. They are given that long to grow bacteria. Hope will reach the 48 hour mark at 6 am tomorrow morning. If her cultures are negative, we will not need line access and can leave the poor girl alone. Our other problem is feeding. At this point, Hope is receiving only 8 mls an hour of feed into her stomach. She needs to receive 24 mls an hour in order to avoid the use of TPN. We are moving her up slowly, please pray that we have success in her feeds. This would be the first time Hope has tolerated full feeds since August, we need a miracle!
If Hope can tolerate her feeds, we can bring her home to await her next heart surgery. If we cannot get her to feed, the heart surgery is a must at this point as she won't grow in the hospital. Please pray for the doctors as they make decisions about Hope this week. Please also pray against infection and the need for antibiotics.
I don't know how long I can handle our family being in two cities. As I loaded Sadie into the car with Shawn this evening, she said, "I don't want to go home without you. Why can't you come?" I explained that I needed to be here for baby Hope and she said, "but baby Hope isn't even at home with you here!" I cried as Shawn and Sadie pulled out of the driveway and started the drive back to Calgary for another week apart from Hope and I. I would love to make the drive back to Calgary this week with Hope in my backseat!