Another rough day for sweet Hope. She was grumpy all morning after a terrible sleep last night. She had a grand total of a ten minute nap in a 12 hour period! She is completely exhausted but too uncomfortable to sleep. We did a lot of bouncing today, she would not let me sit down or stop moving. Thankfully we had lots of visitors today and I kept my sanity!
Hope spiked a fever this morning and started a bit of a fight between her doctor and I. I had agreed to let them lock her PICC with antibiotics, as long as they were restarted if she spiked a fever. They tried to fight me on it this morning when I insisted they were restarted. Eventually they caved and they started again. The Infectious Disease doctor came by and changed Hope's antibiotics as it doesn't make sense that she's running fevers while on them. She is now on one of the strongest antibiotics and although it's not good for her, it might kill the infection finally. They worry that the infection is in the blood clot and will not die until we pull the line.
The petite princess is now only receiving 2mls an hour of feed and is taking everything else from liquid nutrition through her blood stream. Until they find out why she has diarrhea and fevers, they've decided to stop trying to feed her. It wasn't working anyway and they need to solve the problem before we can find a feeding solution. This is a huge step backwards and fairly discouraging in regards to going home one day. Hope is losing weight and they hope that putting her on liquid nutrients will give her some weight gain. The feeds are being pooped and barfed out too quickly to help her grow.
Tomorrow we should receive word about our transfer to Edmonton. Today we were told that Hope would likely be airlifted on Saturday instead of Sunday. I guess we'll find out what new random facts we'll be told tomorrow. Until we're actually driving to Edmonton, I'm not going to believe that we're going. I packed the first time and am attempting to keep those things together to save myself all the work next time. Although now I'll need to pack for Sadie and Shawn as well! At least we can go up as a family now.
Tonight Hope was blessed by a private concert from some of the singers in the New West Symphony and Chorus. She stared at them as they sang and didn't make a sound. I'm pretty sure she loved it. When I played a video of it happening for Shawn he said, "that probably sounds like the singing she hears in heaven each time she almost dies." It's true, I'm sure Hope has heard angels singing around her many times, we're just hoping she doesn't follow them home anytime soon.
Please continue to pray for us as we prepare for another transition in our lives. I was looking back at pictures of Hope today and you can see the life being sucked out of her. She rarely smiles now and hardly plays with things. I want to bring her home so she can progress once again and stop moving backwards. We need answers and we need them quickly, before it's too late.
Friends have organized another 24/7 prayer schedule for Hope over the holidays. I've posted the link for anyone that wants to be a part of it.