Yesterday was more than boring, but not overly eventful. Hope was taken at 1:30 for her MRI and we were told she'd be gone for an hour. After two hours I started to worry and knew that something was not going well. The anesthetist came out and let us know that they were having trouble extubating Hope. The drug they'd given her to paralyze her lungs was lingering longer then they'd hoped. After 3 hours, they finally extubated her and she did very well. She was on a low level of oxygen for a few hours before she started doing well on her own.
Today has been a fairly good day with Hope. It's clear that her throat is sore from the tube yesterday. She struggles to suck on her soother and is more irritable. She's now back on full feeds and is tolerating them well on a low calorie version.
We have not received any results from the MRI. They're trying to contact the liver doctor, but our expectations are low with it being a Friday. They will likely discharge Hope this weekend and bring us back to see the doctor on Monday. Hope will go out of the hospital on the low calorie feeds and I'll work her up to her proper level myself.
I almost laughed when the cardiologist told me that Hope would have to remain in Edmonton and that it was too dangerous for her to leave before her Glenn. He said that was why they were doing the Glenn right away, as it was safer for Hope. I said, "actually, we're still here because I'm crazy and refused to leave. I knew she needed the surgery and knew that if I left, she would have to wait too long." He told me that it was the best decision for Hope and if it was his child, he would have made the same decision. That was such incredible confirmation for me. We want to make sure that Hope's doctors all agree on her care and that we're making the best decisions for her.
We'll be moving out of the Ronald McDonald House this weekend and into a basement suite. Please pray for us as we undertake this project with two kids in tow! This is the best decision for Hope, we need to keep her isolated. We'll miss the meals that are often served at RMH, but it's a sacrifice we have to make for Hope's sake.
I feel ready to leave this hospital. I look forward to seeing more of my family each night and to feel a small sense of normal. I know that it will be a lot of work to have Hope back with our family, especially without nursing care! As I listen to our roommates family sneeze, cough into their hands and talk about the little brother picking his nose...I can't wait to get out of here! The germs are too close for my comfort. Please pray for Hope's health and protection as we take her out of the hospital some time soon. We're about to enter the next stage of our journey.