Today was not a good day for many reasons. Hope's transfer was cancelled as Edmonton is swamped with kids right now. Calgary is also full to the brim and has kids in the ER just waiting for rooms to clear so they can come up to the ward. I guess this Christmas will be different for a lot of families.
In the afternoon the cardiologist came to tell me that Hope's cath has been booked for December 27th and she'll be transferred on the 26th. I was extremely frustrated and angry to be honest. I'm so sick of the constant ups and downs with this journey. I spent so many hours prepping my family for a departure to Edmonton today! Now I have to do it all over again next week. Christmas was the perfect time for this to happen as it allowed Shawn to be there for the procedure with me. He could bring Sadie up and we'd have a whole week as a family. Shawn is returning to work on the 27th and once again, I would not have him with me.
When I'm really angry I find it hard to express myself without crying. Today the tears fell and the cardiologist heard my frustration. She then spoke to our primary cardiologist and he called the doctors in Edmonton on our behalf. They have agreed to try and take Hope as an emergency case on December 24th and transfer her on December 23rd. This is ironically good timing for us. We have to be in the hospital either way, and this way we can be together as a family and Sadie can have Christmas at the Ronald McDonald House. We are supposed to find out on Friday if they can take Hope on the 24th, as the transfer would need to be scheduled at that time. Please join us in praying that they will not delay this any longer. The doctors agree that this procedure, although risky, could greatly improve Hope's current condition and get us closer to figuring out what's going on with her little body.
I'm tired of fighting, I have my guard up at all times in the hospital because there are constantly things happening that are not in Hope's best interest. Today the doctors agreed not to put Hope back on the formula that she has not tolerated the last 3 times it was attempted. Then, in the afternoon the nurse brought in Hope's feed, that same bad formula they'd agreed not to give her. Apparently the pediatrician had misunderstood the cardiologist when they'd spoken about what kind of feed to put Hope on.
Hope is now back on TPN and only taking in 5mls of feed. We are starting at the beginning and have a long way to go before they'll ever consider sending her home. I used to think that being home by New Years wasn't soon enough. Now I just hope to make it home with Hope before her first birthday in April.
Thank you for continuing to pray for us as we journey with Hope. We're getting very tired and know that our strength comes from the Lord and from so many lifting us up in prayer.
Here are some recent photos taken by redlinephoto.ca