Exhausted does not even begin to describe how I feel today. I slept fairly well last night and thought I was ok in the morning, but could think of nothing other than a nap by lunch time. It was another difficult day. In rounds this morning, the doctors were discussing Hope and what was next. I mentioned that I wanted to start the process of getting home and was told that we would be here for another week at least! I voiced the fact that we were moving and that we were brought up here with the understanding that we needed to get home before long and that it would only take a few days. That did not seem to matter and I was told that Calgary wanted us here until Hope was weaned off her heart medication. I did not believe that was true and decided to call Calgary Cardiology myself.
I had the cardiologist on call paged and shortly after, our primary cardiologist called me back. This was extremely kind of him to do as I believe he's still on vacation. I explained to him what happened yesterday and what I was being told today. He was not very happy to hear about our experience yesterday and informed me that Calgary did not want Hope weaned off her heart medications. He promised to look into everything and get back to me as he didn't see why I could not return today.
A few hours later I got a call back from him. The head of transplant cardiology would like an opportunity to look at Hope himself. He is away and will return on Monday. He will also be making the decision, with the team, about Hope's need for a transplant or not. Our doctor felt that if we stayed in Edmonton until Monday, with the promise that we could come back to Calgary on Monday afternoon, that it would benefit Hope and potentially save us from needing to come back in a few days or weeks.
We have decided to honour their desire to keep Hope here until Monday and compromise on not getting to go home tomorrow, if it means we are guaranteed to go back to Calgary on Monday. Shawn, nursey Rachelle and Sadie will be coming up to Edmonton tomorrow to spend the weekend here with Hope and me. I'm hoping that Shawn will be able to remain up here on Monday to meet with the doctor as well, but that will depend on his work schedule so he's not sure yet. Please pray that everything happens the way it has been planned to. Please also pray that any further testing that needs to be done could be done in Calgary and that we'll be able to have more consistent care for a while. The moving back and forth is difficult on our family, but also confusing for the doctors and nurses involved in Hope's care and causes us a great deal of stress.
Late this afternoon I was able to speak with the liver doctor. He reported that the biopsy results are back and that they look really good. Hope does have some dilating of some vessels in her liver, but they expect to see this in someone with Hope's condition. Her liver shows no signs of anything that would prevent her from getting a heart transplant! It also showed that the liver was much healthier than they thought and she would NOT need a liver transplant as far as they could tell. It appears the liver continues to improve and although no one can explain it, I give the glory to God.
Although there has been some tension after the inappropriate discussion yesterday, the doctor involved has shared with other doctors that he was wrong and feels badly. He knows that he has damaged a relationship he had with our family that involved trust and respect and feels badly about that as well. I do not agree with what happened, but I realize we all make mistakes and I respect the fact that he is humbly admitting his error and feels badly. As a result, I am choosing to move on and to work hard to have a professional relationship with this doctor as he will be a part of Hope's life regardless. It will take time to regain that trust and respect, but anger doesn't look very good on me and I feel it's best to get rid of it. Thank you for praying for reconciliation and for strength as I fight for the care that Hope deserves.