Today was not a great day for Hope or for me. Hope seemed to settle well last night and was doing surprisingly well after her surgery. This morning she was agitated and was sleeping constantly. By noon her blood pressure began to plummet and her oxygen levels continued to dip. She is now on 16 times more oxygen than she was last night! That sounds like a ton, but she was barely on anything when she went to sleep last night. It will take some work to wean her off her new oxygen levels though.
Hope was moved into the ICE (step down from ICU) to be watched more closely. She was given a lot of fluid to see if she was simply too dry. It appears to be helping and her blood pressure has come back into a more normal range.
The hiccups with Hope are tolerable, we almost expect them and are able to stay decently calm. The staff seem to react quickly and keep a close eye on Hope. She has proven that she can't be trusted and can change quickly.
The most difficult thing today has been the frustration of this entire situation. The doctors continue to remind us of Hope's fragile condition and their lack of faith that she'll live a long life. In many ways I feel like they have already decided she will die. With this in their minds, no one wants to be the one that tips the scales in a negative way. As a result, Hope's heart surgery is being avoided at all costs. We do not want Hope's surgery to be an emergency procedure that is done as a last resort. We'd like her to receive it while her body is still decently strong and she has a stronger chance of survival.
It is so painful as a mother to feel like you have to truly fight for your child's life. The weight of the responsibility is almost crushing and I was feeling very down today. I'm emotionally exhausted and looking for a plan to be made. I need to know that Hope is not being forgotten and that she is a priority here.
We want what's best for Hope and nothing less. Being here in Edmonton is not easy on our family, yet we are willing to stay as long as we need to for Hope. There are so many obstacles with Hope leaving the hospital and being discharged to the Ronald McDonald House or being transferred back to Calgary as we wait for the heart surgery. Hope needs oxygen and a feeding pump, and apparently this is a very difficult thing to arrange because of "the system" that exists. Mind-bogging to say the least.
We still have no idea what will happen next, but we are worried and would like you to pray that Hope is the focus of the decision. We pray that what is done is best for Hope and nothing less. Please also continue to pray for us, we need to be encouraged today.