There have been days that I dream of being all alone, not taking care of anyone's needs but my own. I am currently all alone at the house. Shawn is at the hospital with Hope and will be spending the night with her on the ward, Sadie is at a friends house for the night, and I don't feel the freedom I had dreamed of. To be honest, I feel helpless, frustrated and trapped in this house and my sick body. My body has finally stopped disposing of all the fluids inside it, I'm just left with the hangover of it all. My prayer is that I'll feel 100% after a good sleep tonight and will be able to return to the hospital and be with Hope.
Anyone who spends time with Shawn and I would agree that I am more aggressive. Shawn is not a fan of confrontation and is often very easy to get along with. I have a strong personality, like my grandma, and I believe God has used it throughout my life in a lot of positive ways. Not being at the hospital has been driving my crazy, nothing seems to be getting done and I'm not there to stir the pot. So, tonight I picked up the phone and started to call everyone I could find to complain to. Within 30 minutes we had some doctors looking at Hope and had alerted the staff that I can make noise from my house too!
Hope's stomach was vented after her girth reached an all-time high of 46cm. They removed a lot of air and some fluid. This has brought her down to 42cm, better than 46cm but still very swollen. I'm not sure what GI has been up to all day. I know they have a lot of sick children to see and prioritize their patients accordingly. I simply wish I could get same face time with them and push them along a little faster as they deal with Hope. We still have not heard from them, apparently they're looking at the MRI, not sure how that takes all day. Although, I've never looked at one before and should be cautious to judge.
Once again our support has been such a blessing. One friend drove from the south to pick up some breast milk and supplies for Shawn and Hope, and drove them to the hospital. Another 2 friends worked to keep Sadie busy during the day until she left on her sleepover. She knew I was in my room and it's not an easy task to keep her distracted when Mommy is so close by. A lovely soul brought us dinner, I was even able to send some to Shawn at the hospital and someone else picked up some groceries for us. I'm continually blown away by the outpouring of love and will never be able to repay the kindness we've received.
On Tuesday, Hope will be presented to the surgical board in Edmonton. At that time, they will decide if they want a heart cath done before her next surgery. This will expose the pressures in her heart and lungs and give them a better idea of what to expect. They will also begin discussing a surgery date for her. I am truly praying that we can be through this portion of Hope's journey before the end of September. I realize those are lofty goals, but really feel like it would lift a lot of stress, questions and anxiety.
Shawn's sleep is so important to him, he stayed at the hospital once before and was miserable. Please pray that he's able to get some rest tonight and won't be exhausted tomorrow. I miss my family, please pray we'll all be back together in our home soon! Hope will go back on continuous feeds tonight to give her stomach a rest. They've also decided to lower her feed volumes tomorrow to see if this will help. Please pray that her weight is not hugely affected by the calorie cutting.
Looking forward to the day when my life is boring and I have nothing to blog about!