When I was in labour with Sadie as well as with Hope, I found staring at one object was the most effective way to deal with the pain. If I closed my eyes I wasn't able to control the pain I felt. Focusing on a non-moving object seemed to help. Today I found myself in that place. Laying in the bed next to Hope, unable to close my eyes or the pain would take over, staring at a specific crack on the wall.
After days of passes and talking about going home, life came crashing down today. Hope has been on passes, but has truly plateaued. We are not able to balance her fluids, her electrolytes or her diuretics. It's frustrating and seemingly endless, I simply assumed we'd find a way eventually. Yesterday before leaving on our pass Hope had a routine echo done. Once completed, we went out the door and spent the day outside of the hospital.
This morning Sadie woke up with a cold. That destroyed my plans of taking her into the hospital to pick up Hope for her pass and I was unsure of what I was going to do. I didn't know if I should bring Hope home or not. Eventually Hope would be home and we wouldn't be able to kick Sadie out if she had a cold. I could not decide what to do. As I put on our shoes the phone rang. The hospital was calling to inform me that Hope was not doing too well and would not be able to go on a pass. I was suddenly stuck with a daughter that needed me at the hospital and a daughter with a cold that could not go with me to the hospital. I am so tired of being torn between my girls and I was stressed to the max. After calling Shawn to ask him what I should do, I pulled myself together and started begging all my friends, once again, to help me. I have used every favour a person can ask for in a lifetime of friendship. I have a lot to pay back and I have some amazing friends.
Sadie and I went to the hospital and transferred her carseat in the parking lot. She would spend the morning in one place and the afternoon in another. I went upstairs and found Hope with laboured breathing, but not looking horrible. She was extremely grumpy and would cry anytime she wasn't able to see me. As I sat with her on the bed I could hear the cardiologist speaking to the other doctors. I knew they were discussing Hope and recognized right away that something was wrong and prepared myself for the devastation.
An amazing cardiologist walked in with a whole gang of people. She has had to give us bad news on numerous occasions and I trust her, I was glad she was on. She explained that Hope was stuck. She wasn't getting strong enough to go home, but was often strong enough for passes. She shared that in our current position, Hope would likely never get out of the hospital. She then went on to talk about the echo. Hope's aorta continues to have high pressure and the right side (only existing side) was showing decreased function. A meeting was called among the cardiologists this morning to discuss what to do about Hope. They had decided that Hope's heart was not going to get better, the pressures were causing the fluid in her lungs and surgical repair was not an option and also much too dangerous. The consensus was that a heart transplant was her best option.
Hope's liver has always stopped her from being a transplant candidate. They have questioned whether or not her liver was improving lately. The ascites is now gone and the varices have improved. The ultrasound shows the clot is still there, but does she have portal hypertension? (you may need to google some things, too lazy to explain tonight) If Hope does NOT have portal hypertension, she is a candidate for a transplant. She will need to have further testing, a liver biopsy or liver catheterization, to rule this out and properly look at the liver. We're not yet sure if this can be done in Calgary or if she'll be sent to Sick Kids in Toronto for this procedure.
Hope was sent to the PICU this afternoon and started on Milrinone, a heart assistance drug, to kick her heart into gear. If this week on Milrinone makes a big difference with Hope, we'll know that she needs a new heart. If Hope does not do well on it, the heart may not be the issue. If the hypertension is there, we may need to look at whether Hope could receive a liver and heart transplant at the same time. We are not even sure this is possible, but it is being looked into.
We are functioning, only because we are used to being numb and hit with horrible news without warning. We are in pain though, this is not what we were expecting and it is painful. Three weeks from today we take possession of our new house. We are excited, but it seems so meaningless in light of Hope's condition. Packing has become more of a pain and less enjoyable, but is a nice distraction at least. I am completely over having to call Shawn and dump horrible news on him while he's at work. I can't imagine finishing work after a phone call like that. I would likely be in a bathroom stall in tears for the rest of the day.
We just told Melanie (Sadie's Nanny), that we likely wouldn't need her full time in May and June. That has clearly changed and it's frustrating to know that we will continue with that expense. God has blessed Shawn with a great job that allows me to stay home with our kids. We never expected to hire a Nanny when I was at home. Thankfully Melanie is amazing and Sadie is more stable as a result, some expenses are too valuable to remove from our lives.
Please pray for Hope and for our family. Although we have not yet been listed, I already think of the family that will lose a child in order for Hope to get a new heart. Somewhere a family lives with a child that they may have no idea they will lose. That breaks my heart and yet I am already thankful for the difficult choice they will make to donate that child's organs. My heart is in pieces and once again I am forced to find the strength to carry on. Thank you God for giving me that strength.