Last night I could not sleep and was up reading until almost 1am. I finally fell asleep for only 6 hours before Shawn and I were up to be at the hospital on time. I am exhausted today, but was thankful to have Shawn with me and not to be going through this all alone.
During rounds the doctor said that Hope would likely be listed in the next few days for transplant. That was the first time we'd heard that things were progressing in that direction. After rounds we were taken into his office with the head of transplant and a few of the residents. We had the meeting that we were supposed to have last week, the meeting that had not gone well. It's a difficult meeting to sit through, even though we are aware of all the risks, it's not easy to hear them listed.
We were told that Hope is an extremely high risk transplant. The clots she already has in her body raise her risks a lot and her high pressures from her tiny pulmonary arteries will continue to be a problem post transplant. There is no guarantee that having a whole heart will correct her feeding issues or liver dysfunction. Hope is already forming calcium in her kidneys from her long term diuretics treatment. The medications she'll be on post transplant will also damage her kidneys and we can only pray it does not get bad enough to make them shut down. The medications required post transplant have a high risk for causing cancer and other not so nice things. There is always the risk of rejection and infection as well. It is not a cure, as I've said before. It is another step in her treatment, but not a final solution.
Hope will be discussed tomorrow in surgical rounds again. As long as the surgeons maintain their opinion that surgery is not an option at this point, Hope will be put on the list on Wednesday. This is not a final decision. If Hope somehow improves and is able to go home and come off the heart assistance meds, she would be taken off the list in hopes that she could have the Fontan (3rd surgery). Shawn and I agree that if she is able to have her final surgery, we would prefer that over a transplant and the risks associated with it at this point.
After the meeting with transplant, Shawn and I met with the doctor that does all the VAD's (ventricular assistance devices) for the hospital. Edmonton has one of the best programs in the world for VAD's (an artificial heart that pumps for your own heart while waiting for a transplant). He explained that the longer Hope is on the heart assistance drugs, the more it will damage her heart, although currently helping her. If she has to wait a long time for a heart, there is a chance that she'll need a VAD to stay alive as she waits. The VAD would need to be attached while she was still healthy enough to handle the surgery so it could happen before you would think she needs it. Hope's size only allows her to be a candidate for a Berlin Heart. I'm not even sure how to explain it properly, please google it, you'll be amazed at what they can do these days!
The Berlin Heart comes with another set of risks for Hope. Blood clots and stroke are a major risk and Hope clots more than the average baby. We pray we don't end up needing to be on the Berlin Heart. It would require Hope to be in Edmonton and in hospital until the new heart was found. The doctors feel that in Hope's current condition, she may be able to live up to a year waiting for a heart. We were also told that her blood type, A, is more highly matched and it could lower her wait time. The list is currently long and they have seen patients wait from 2 hours to 2 years on the list. We need to spread the word about organ and tissue donation. It is truly the gift that we are waiting for.
After an exhausting and difficult morning, we were told that Calgary was on their way to pick us up and would arrive in 2 hours. Shortly after, we were told that the flight was grounded due to weather and transport today was cancelled. The stress of moving, being stuck in Edmonton and the emotional exhaustion of this trip has been almost too much. They will try to transfer Hope tomorrow morning, please pray that it actually happens!
As long as Hope is relatively stable, we should be able to wait in Calgary until a heart is found for Hope. They've told us to expect a wait of 6-9 months and the potential that Hope might be in hospital and potentially in PICU through that entire time. It's difficult for us to think about still being in hospital at Christmas time this year, but it is easily possible. We appreciate your prayers right now - we sure need them.