It's true, we are making our 4th trip to Edmonton with little Miss Hope. The doctors have decided that the heart cath is in Hope's best interest and are going to move forward with it. They gave us the option of waiting until December 26th, but we'd like to get this going as soon as possible. I'd hate to find out that Hope needed it and we delayed so we could pretend that Christmas was "normal" this year. Later the doctor confessed that they had offered the 26th in case things didn't go well. They didn't want us to associate losing Hope with Christmas. I told her that if we lost Hope on December 21st or December 31st, we would spend every Christmas holiday thinking about this one regardless. We are praying that this is not the case and are moving forward with this dangerous procedure.
Today, the GI doctors decided they would stop Hope's antibiotics in order to see if it would stop her diarrhea. I firmly stated that would NOT be happening. Hope still has a line in her leg that is infected. The antibiotics are the only thing keeping her from going septic and I am not risking a blood infection just to stop diarrhea. They can give her fluids through the line to keep her hydrated. The antibiotics will run until the line is out, that is not up for discussion. The doctor then said they planned to switch Hope's formula. I was so frustrated, they want to switch her to a formula that we have already tried, and failed, using twice. I know they can't memorize her chart, but let's try something new for once! GI is going to meet again and see if they can come up with some new ideas, obviously these ones are not any good.
Hope continues to throw up her feeds, has terrible diarrhea and is generally uncomfortable. I'm not happy about returning to Edmonton, although I feel it is best for Hope. I am ready, more than ever, for some answers and solutions for Hope's fragile body. I want to bring her home.
Tomorrow, I will be driving up to Edmonton on my own after Hope is airlifted. Shawn and Sadie will come up on Friday to join me and will be able to stay for a week if needed. That is one good thing about Christmas, Shawn is off work.
We called RMH today and have a room starting on Saturday if we are still there. We decided this would be the best place to spend Christmas if we need to be up in Edmonton. Sadie will have an absolute blast and will be with other kids that are out of their comfort zones as well. There is a chance we'll be back in Calgary, but are planning ahead just in case.
Going to Edmonton on my own means I'll be living in the hospital 24/7 with Hope. I'm not sure how sane I will be by the end, especially with a roommate again. Please pray for strength and endurance for me as I'm going to need it. When Shawn and Sadie arrive, we'll move into the RMH and I'll have more of a home base to come and go from.
I am doing everything to keep from having a breakdown tonight. I have too much to do and not enough time to cry. I need everything ready for Christmas for Shawn to bring up to Edmonton if needed, packing to do and things to organize. I don't know how to ask you to pray. I just want Hope home and this all to be over, pray that happens.