Yesterday was very stressful and I chose not to blog, as I knew I would say things in frustration that I would regret. As I was getting ready to leave the house I got a text that said, "They are taking Hope to the OR now." I was obviously very confused and not comfortable with Hope being taken to the OR without Shawn or me there. It turns out that the day before they had only adjusted Hope's PICC line and had not rethreaded it. They were now going to take Hope into the OR to rethread her PICC. They had failed to communicate this and we had not signed consent. After numerous phone calls back and forth with the hospital, they agreed to take Hope without giving her any anesthetic. They rethreaded her PICC line and everything went well.
Once at the hospital the doctors repeatedly apologized for failing to communicate that Hope was going into the OR. While I had their attention, I decided to talk with them about Hope's bloodwork. Since being back in Calgary, all of Hope's bloodwork has been taken peripherally and not from her PICC line. Some days that means Hope is poked 3 times! This is simply not okay with Shawn and me. It's not that we don't want her to go through the pain, although we don't, but they damage her veins each time they access them. In November when Hope had her bleed, they were not able to get an IV because her veins were so damaged from all the bloodwork. After resting the veins for a few weeks, they began to improve.
I made it cleared that Hope's regularly scheduled bloodwork needed to be drawn from the line twice a week. I was told this was not possible, as it is against hospital policy and will never be allowed. To make a long argument short, if you refuse to allow them to do anything else, they will break hospital policy. Everything they insisted up and down that they would never allow, is now what will be done. I don't understand why a parent has to fight so hard to protect their child. This is something that we should be discussing in order to protect Hope, not fighting about.
In frustration with me, the doctors were rude and hurtful. When I shared that we wanted to get Hope home as quickly as possible in order for her to grow and have her next surgery, the doctor said Hope wouldn't be able to have it. Once again I was met with negative attitudes about Hope's future and her potential to survive. I am absolutely over the opposing information we receive. One day Hope has a chance and a future, the next day her future is not possible and she's days away from death. I need the doctors to decide and stop taking us on this roller coaster.
The doctors are now planning a meeting for next week with all the important players to decide what is next for Hope. We will make an official plan and be able to move forward with a plan that everyone has agreed to and can be held accountable for as well. We are praying that this meeting is what we've been missing and will help us make some progress. Hope is also being put under a complex care team, this allows her to have a consistent pediatrician so that her care is not passed from one doctor to another each week. We are praying that this doctor will believe in Hope's life and will fight alongside us to give her a future. We know that Hope's future is in God's hands. We do pray that while she's with us on earth, that he provides fantastic doctors to care for her and make her life as wonderful as possible.
Today I am in deep need of encouragement and hope. Yesterday left me broken and completely exhausted in this journey. I drove home from the hospital completely broken and in tears. Today I am going back to the hospital with hope of a better day. Mostly because it's the weekend and no one will come to make major changes on a weekend. This will allow me to cuddle with Hope and enjoy my time with her. Her life is in God's hands, I want to cherish each day that God allows me to hold her in my own.