Today was a good day for Hope. They were able to remove the remaining tubes from Hope's chest. As a result, they stopped her morphine as well. Her pain is now managed by Tylenol and Ibuprophen and the odd dose of sedation. Hope is clearly more comfortable and slept most of the day away. The only things remaining are Hope's PICC line, which we'll need for awhile, and her pacemaker wires. These are not currently being used and will be removed tomorrow. Once these wires are removed, she will likely be moved to the ward.
Shawn was with Hope this morning in the PICU when they mentioned moving her directly to the ward, instead of I.C.E.. We were obviously very uncomfortable with this idea. She still has wires protruding from her chest that go directly to her heart! Shawn pulled out his firm voice (this is only heard once every 20 years or so), and told them we weren't comfortable with that. It was a decision fully based on bed shortages in the PICU. We have been the parents waiting for a bed in PICU, and the parents that were moved out too early. We almost lost Hope when they flew her to Calgary before she was ready because of a bed shortage. We refuse to be moved until Hope is ready, she's just too fragile. ICE is a much safer place for Hope until all her wires are removed and her risk of infection has decreased.
Hope's tummy was at 40.5 cm today!! I believe her lowest recorded measurement is from early August at 39 cm. This is incredible and we are very excited to see her making so much progress. We had been told her tummy would likely be at an all time high after surgery. Praise the Lord they were very wrong! We moved her feeds up to 3 mls an hour and hope to continue increasing her feeds. Please pray that she'll tolerate the increases, it's the main thing keeping us in hospital at this point. We need Hope to receive at least 30 mls an hour before they will consider sending us home. It feels like a long way off at this point.
This is one of the most difficult stages. When we know we'll be in Edmonton for a long time, we give up the idea of going home and get comfortable here. As soon as there is even a hint of possibility to go home, we start to really miss our home and long to go back. Please pray that God gives us wisdom as we are involved in making the decision about Hope's return to Calgary at some point.