Riding with hope

Those who know me well will know that I am not a roller coaster kind of girl. I much prefer the merry go round. It's a gentler ride and on horses which is bonus. The merry go round is much more predictable, with some ups and downs, and always moving in a forward direction. Yet, life is not always like the merry go round. More often, it seems, it is like a roller coaster, with some exhilarating ups and terrifying downs and always a bit unpredictable.

The past few weeks have been very much like a roller coaster. There has been the exhilaration of finding a living donor, and then the stall at the top of the hill with no progress towards a potential surgery date. And the quick crash down of having my fears confirmed that Hope is becoming sicker.

We had our 3 month recertification for the UNOS liver waiting list last Wednesday. Children must be re-certified every three months to determine their status on the list. Our doctor does labs every month, so I had an updated score last month. The score is a called a PELD score number, with PELD standing for Pediatric End Stage Liver Disease. The higher the number, the sicker the child, and the more urgent the need for an organ transplant. Hope was listed with a "moderate" score of 18 back in July. It was the same number in August. In September, she moved to 19. And now, she took a jump to 24. Her jump in score is because she is not able to clot her blood as well (a function of livers) and her kidneys are weaker (which happens in liver disease). Despite the fact that she looks SO much better on the outside and continues to flash that award winning smile, she is sicker. Our amazing liver doctor, recognizing that she is sicker, told me that she would be applying for "exception points" for my girl. Exception points are written for by a child's doctor, which allows the child a higher spot on the list. In Hope's case, she has been written for a PELD score of 40. Her doctor explained that because of Hope's huge abdominal size (we had to have 3 different doctors examine it and have another ultrasound done on Wednesday because it is THAT big), her negligible vitamin levels, her portal hypertension, and her poor growth may allow UNOS to agree to place her higher on the list. Sometime this week we will have an answer to know if the points have been accepted.

It was very clear at our appointment on Wednesday that our team prefers cadaveric organ donation. I asked our doctor why. Her answer was simple. That there is no risk to another patient. Surgery is surgery, and even minimal risk surgeries (which our donor's team has said hers would be) carry risk. Other than that, there is no difference in how Hope receives her liver.

I left the appointment exhausted. And deflated. In the past three weeks, we had pneumonia hit our home for two girls, and lice hit for two girls (eek!). Hope is only sleeping 30 minutes to an hour at a time most nights now. Long gone are our two hours of uninterrupted sleep chunks. One fellow liver mom told me that as liver disease progresses, the baby's body becomes desperate for nutrition so wakes up to feed in an attempt to get what it needs. But it can never get what it needs, because the liver is too sick to absorb nutrients. My poor sweet baby girl. The roller coaster has been spiraling down so fast and I wanted my family off. I wanted the merry go round. I wanted to sit on the horse and have just little ups and downs, not this terrifying fast ride. Then I realized, I am not alone on the crazy coaster. God has provided me an army of friends to ride along with me. People praying for us during the ride. People who have been delivering food and meals. A friend who always thinks to offer to pay for the extras at my daughters' school. Friends who are not afraid to come into a home with lice or pneumonia and just hang out with us. Family and friends willing to stay with a child with pneumonia so another could get to a long anticipated appointment. Friends who message, call, and text just to check in and see if anything is needed. Friends who show grace when I cannot return a phone call or am late sending a thank you. A friend willing to take the time to email a vice president and explore financial resources so my children do not have any interruption in their child care routine. A donor who is willing to say YES. A friend who continually puts out our story in order for needed financial support since we have no income or unemployment benefits. A friend who donates her time to take family photos, and another friend who opens her home for a spur of the moment dinner. Fellow liver mamas who tell me that they understand, one who shares data on the kids waiting and takes the time to explain it to me, and others who remind me to live for today. A spiritual director who reminds me that God has the best plan for my sweet baby which is unfolding as it should be, and that I need to be patient and trust that He knows best. My list could go on an on. All mercies. From Him who sits next to me on the crazy coaster.

I am not sure how much longer we will be on the roller coaster as we wait for transplant. I do know that I would not trade this ride, as scary as it is, as it is MY ride. I do not know what corner, hill, or slope we are heading to tomorrow or next week, but I do know there will be more mercies. And I plan to hang on Him for the ride.