It appears we are not able to have a drama free day! Today was once again full of drama. In rounds we were told that Hope's surgery for tomorrow is cancelled. I was obviously upset about the change and asked to speak with Dr. Ross directly. The cardiologist agreed to have Dr. Ross come see me and felt that it might help. Dr. Ross was wanting to wait to get a second opinion from Boston and Toronto. Although this sounds wonderful, he also said he thought they would tell him what he already knows.
Shortly after this the nurse came to tell me that the OR had called and confirmed a surgery time of 7:20am tomorrow. I was thrilled! Then 10 minutes later the OR called to cancel that time. The roller coaster never ends with this child! Dr. Ross came by at noon to say that he was too busy to sit down and properly talk about things so he would be back at 4pm. He arrived early at 2:30 and sat down with me to talk about Hope's surgery.
An emergency case came up during the day and Hope's spot was no longer even available, she would have been bumped regardless of Dr. Ross' hesitation to do the surgery. I voiced Shawn's and my opinions about waiting to do the surgery. We want to do the surgery while her PICC line is working, and while her body doesn't have an infection. This surgery is the only thing keeping us in Edmonton and apart as a family. Once this is finished, there is nothing to keep us from being transferred back to Calgary to continue Hope's care there until she can go home.
Dr. Ross agreed with all of my concerns and felt that Hope could benefit from going into surgery. Unfortunately he has 10 other families in the same position. He was clearly angry about the position he is in, not at me, but at the government. I totally agree with him and am a witness each day to how bad the situation is. The Stollery has the highest success rates for cardiac surgery in North America, but you would never know it. The richest province in Canada is home to one of the worst PICU's you've ever seen. The infection risks are crazy high because the beds are feet apart! They need a new hospital in Edmonton desperately. Apparently there are planned budget cuts for the Intensive Care in order to open more clinics. This is going to be devastating for families like ours.
He has agreed to come into the hospital on Sunday, even though he's not working, in order to operate on Hope. This is obviously still dependent on a PICU bed being available and other logistics. If this date is bumped, Hope will be taken at the first available slot next week. We are praying that it works out for her to go on Sunday and that we're not waiting until next week. It's sad to think that so many heart children are left untreated for a time because of lack of nurses, bed availability and OR time. One day I should go back to school and get into politics, I have a lot to say! We all think tax cuts sound amazing, until we need services and the government can't afford to provide them. I would surely pay higher taxes in order to have my child receive the care she needs.
After sitting down with Dr. Ross I asked to see the cardiologist. Hope had been sleeping almost the entire day. I was worried that something was wrong, she was too settled, too sleepy and lethargic. They agreed that something was weird and drew more blood from Hope's PICC line. Everything came back normal. At 4:30 she continued to sleep and was slow to respond. The doctor was getting more worried, as was I, and ordered a CT Scan of Hope's head to make sure she wasn't bleeding. By the time Hope had the CT and the results were read and reported back to me, it was 7:30pm. The resident stayed late just to give me the results, it was truly compassionate as she knew we were worried. The scan was all clear.
One of the ICU doctors came up and suggested that with her liver issues, perhaps the anesthetics from yesterday are lingering longer than they should be. This is possible, but after 15 anesthetics it's hard to be sure if she's doing something new or if she is showing signs of a problem. Seeing as no one had any new ideas of what to look for, Hope will have to show us. If she perks up tomorrow we'll know that she was just sleepy. Please pray there is nothing new going on.
Please also pray for my mom. She was extremely tired all day today as well and we worry she could be getting sick. She went straight to bed and is hoping that sleep will cure her. I figure if we get the masses praying, she may wake up feeling like a new woman! I really need the support and would struggle to be alone at the hospital and to know that my mom came all this way and has to be sick without the comforts of home.
Today was an incredibly long day. I cried as I pleaded with our surgeon to operate on Hope. I sat for over an hour to find out if my child was bleeding from her brain. I planned to leave the hospital at 5 but left closer to 8. I'm tired, I need to get back to Calgary where I have a more normal routine going and can be with Shawn and Sadie. I had told Sadie yesterday that she would see me tonight, and once again she went to bed without kissing me goodnight. This is not easy and we would not have the strength to continue without the power of God and the prayers of his people.