Brokenhearted. That sums up how we're all doing. On November 18th when we were told that Hope's little heart was broken, I mourned. I wasn't sure if she would live or die, but I mourned the blessing of a healthy child and feared the worst. Today my heart feels much the same. Do I know that Hope will die? No, but I fear the worst and am being forced to face reality.
This afternoon and evening have been difficult to say the least. I sat through 3 important meetings with our most important doctors. I met with our favourite cardiologist in Edmonton, our surgeon and the cardiac anesthetist. The reality is not good and Hope is running out of options.
The failed PICC line is a much greater devastation than we initially realized. The cardiac anesthetist explained to us today that he went into the OR for Hope's procedure (although he was not handling her care) and watched. When they ultrasounded her arms in search of a useable vein, what he saw was not good news for us. He informed us that we will come to a place, and are near there now, when they won't be able to operate on Hope any further. They simply won't have a vein that is useable and there won't be anything else they can do.
Every procedure, surgery and poke is destroying Hope's veins. If we had an option, we would cancel Hope's hernia surgery on Monday. After meeting with the heart surgeon, we don't feel this is an option. If the hernia were to strangulate (close off at the top), whatever is inside the hernia would be killed. This is something we already knew, but that's not the worst of it. If this happens, it's a death sentence for Hope. She would not survive and there would be nothing they could do with her current set up for circulation to her bowel. It's simply too risky to leave and the hernia operation will have to be done.
Each time Hope is put to sleep she does not tolerate it well. Anesthetic is dangerous for a healthy person with perfect anatomy. When Hope is asleep, her heart struggles and she needs to be given different drugs to keep her going until they finish. It is dangerous, and becomes more so with every procedure. The anesthetist working with Hope on Monday is one of the best. The head of cardiac anesthesia selected her personally to put his own children to sleep. There is only one cardiac anesthetist on service this week, and he'll be in the OR doing heart surgeries. This is our next best and only option for Monday.
There is one thing that every doctor agrees on, Hope's surgery on Monday is VERY risky. They also agree that we don't have another option. If Hope defies the odds and sails through her surgery on Monday, Dr. Ross will book her Glenn for when she is recovered. If she runs into complications and does not do well, as they expect, he won't operate. At that point, if she stabilizes, we would be sent home to wait. They would wait until she was literally not able to live without the Glenn and would then take the risk. They aren't sure if waiting would help, but hope that somehow it would.
This is not the end of the terrible news. If Hope sails through and has the Glenn, they are fairly sure she won't be a candidate for the Fontan (the third and final surgery) because of her liver. The pressures from the new circulation would kill her. She would have to be listed for transplant. There is a surgery they do in Toronto that we could attempt first, but the survival rate is low. We'd have to weigh the odds and make a tough decision at that point. The doctors don't talk much about it as they aren't sure she'll make it to that point.
If you saw Hope on a good day, it would be hard to believe that things are so serious. Many days we forget how fragile she is and feel so confident that we'll walk her into her first day of school. On days like today, we are reminded that celebrating her first birthday will be nothing short of a miracle.
One of the doctors raised a really tough question with us. He shared that here in Edmonton specifically, they have become incredible at working with hearts. They are able to do things that were not thought possible before. He shared that he struggles with whether they've gone too far at times and pushed families and children through surgeries that won't change the final outcome. He challenged us to think of Hope and not to make her suffer any further once there was no Hope of a future for her. He doesn't feel we are there right now, but warned that we were getting close.
In our third meeting, when I had worked up the strength to ask, I asked if the doctor thought Hope's chance of survival was low. He looked down and stated that to be honest, he didn't think she would survive. He feels that the clotting, lack of useable veins and liver issues have pushed us into an impossible corner. I pray he's wrong.
On days like today I don't know how to pray. I feel pain and nothing else. I don't know what to ask God for other than Hope's life, and I know that is already in his hands. I plead that he spares it, but trust that he has a plan, even if I may not like it.
I'm truly numb and don't want to talk to anyone. Shawn and I drove to RMH from the hospital in silence, what do you say? Shawn is sleeping at the hospital with Hope and I asked my parents to go to a hotel tonight as they had planned to do. I know that this is difficult for everyone and they need an opportunity to mourn as well, I simply don't have the strength to witness it. I needed to be alone with my pain. Sadie is sleeping beside me and I can only hope that somehow I'll find a way to sleep as well.