This is Amy's mom again (Charlotte).......
The last couple of days have been disappointing and very stressful, to say the least, as Hope's status has slowly deteriorated, upon arriving back home in Calgary. I had gone to bed last night with a heavy heart and woken many times in the night to pray for little Hope. This morning, as Amy was getting ready, I read her a verse....."Who of you by worrying can add a single hour to his life? Since you cannot do this very little thing, why do you worry about the rest?" (Luke 12: 25-26). I think I was reading it to her more for my benefit than hers, as I was very unsettled and outright worried (like a true grandmother!) about what had gone on in the last couple of days. On the way to the hospital for morning rounds, I said to Amy, trying to be an encourager...."it's' going to be a brighter day today!".......
As the day is ending, I can honestly say this has been one of the darkest days we have had. As we were nearing the hospital, Amy's cell phone rang. It was Shawn phoning to ask us to please come and pick him up at work as the PICU called, wanting them to come to the hospital ASAP. When we got to the hospital, the room was filled with various doctors and nurses and medical personnel, all working on little Hope's little body. The intensivist (intensive care doctor) and cardiologist took Amy and Shawn aside and said that they had discovered a blood clot and that Hope's lungs were failing. She had been intubated and they were waiting for the transport team to air-lift her back to Edmonton, as Calgary is not equipped with a heart/lung bypass machine (ECMO or life support) should she require it. Moments later, Shawn and Amy left to make the drive to Edmonton to try and get there shortly after Hope would arrive. As it turned out, they arrived in Edmonton way ahead of Hope. As the transport team was transferring her in the PICU, one of her I.V.'s failed and it took them 2 hours to get one placed in her head. At around 3:30 p.m., Shawn and Amy watched as Hope was wheeled back into the PICU at the Stollery.
Within a short time of arriving, she had had echoes, x-rays, ultrasounds of her head, heart, chest and neck. Dr. Ross was there, along with cardiologists, a thrombosis specialist, R.T's and several others. The biggest concern was that the Edmonton team had been told by the Calgary doctors that Hope's blood clot was in her SVC (superior vena cava). Hope's second surgery (the Glenn) will need to be done at 4-6 months of age and should there be any kind of a blockage/blood clot in that vessel, Hope would not be a candidate for that surgery. Her only hope, at that point, would be a heart transplant. The best news all day was that the blood clot was not in the superior vena cava - it was actually in her innominate vein. After much discussion, it was decided that surgery was not an option - since Hope was only 13 days post surgery and the risk for bleeding was much too high, and the course of treatment would be continuous Heparin to stop the clot from getting bigger, or any others forming. If that is unsuccessful, the only option would be some very powerful drugs that carry very big risks along with them. Her heart rate and blood pressure is very low and the first priority is to get her stabilized and take some pressure off her lungs. They continue to suspect an infection, even though her cultures have come back negative and so they will continue aggressively treating it with antibiotics. The doctors cautioned that Hope was in a critical state and that her condition was going to be closely monitored as they waited to see how her little body would respond in the next while. Shawn and Amy decided to stay in the "family room" at the hospital so they could be close by through the night and I am staying at a hotel, since the Ronald McDonald House was full.
We are all totally exhausted and are still in a bit of shock that we are back here in Edmonton. This is not how it's supposed to go! Seeing little Hope back on the respirator and looking so puffy and pale is heart breaking. They paralyzed her body and sedated her for transport and seeing her laying so still was almost more than I could take. We are thankful for the fact that Hope's clot is not in the SVC and are just asking God to help her lungs recover from the fluid and extra strain, heal her of this infection, keep her I.V's stable, give her good levels/blood gases/vitals and dissolve the clot so that there would be no need for any additional intervention (i.e., the more potent/risky drugs). It's a lot to ask but our GOD IS ABLE and we are humbly asking Him to miraculously intervene and do a powerful work, for His glory alone.
We know that so many of you are praying and we will never be able to thank you enough. Collectively, you are surrounding Hope with God's goodness, His love, His protection and His strength and we covet every single word uttered to Him on her behalf.
Please continue praying for this precious little life. We have only known her for 27 days and yet we can't imagine life without her!