Nov 16, 2019 Latest post:
Mar 20, 2020
On Saturday, the 9th, Eva came down with what appeared to be a flu virus. The following Wednesday evening she became substantially worse, unable to hold down any fluids and became very lethargic. Thursday morning at 4 AM after a period of vomiting fluid I noticed the beginning stages of delirium. Attributing the delirium to dehydration, I planned a trip to the urgent care as soon as it was open. At the urgent care, they gave her an IV hoping that it would wake her from her lethargy into a state of normal. Unfortunately it did not wake her into a state of normal but woke her into a state of altered behavior. We left the urgent care and went immediately to the emergency room at St. Vincent‘s. St. Vincent‘s was fantastic. They immediately realized the urgency of the situation and begin testing her for everything. Within a few hours she was in the pediatric intensive care where the PICU attending determined by her lab numbers that she was in acute liver failure. A few hours later they transported us by life-flight to the transplant unit of Seattle Children’s Center.
Upon arriving at Seattle children’s center, no less than 30 medical professionals descended on Eva in an effort to protect all her other functions and organs from shutting down. At that time, her kidneys, heart, lungs, and brain were at risk. Over the next 24 hours her lab numbers improved. Her kidneys did not shut down, her heart remained strong, her lungs remained strong with the help of a breathing tube but the brain continued to swell. It has been at risk and is still at risk. Brain swelling could cause a stroke and brain damage. They have been watching it carefully and the numbers have continued to improve to some degree. But the swelling has not decreased and there is still some risk.
On Friday afternoon they placed Eva on the UNOS transplant list as status 1A making her the first in the country to receive a liver as soon as it became available. By Friday night somewhere between 8 and 10 PM a liver became available to us. Although the liver is not perfect, the surgeons have decided to accept it due to the life-threatening conditions. At 9 AM Saturday morning she went into surgery and we are now awaiting the outcome.
Our immediate concerns at this time is that her brain does not swell anymore during surgery, that her body does not reject the liver and that they are able to close her abdomen after the surgery. If her abdomen swells, they will have to leave her open for two days and then close her once the swelling goes down. Leaving her abdomen open could put her at risk for infection and lengthen the time between surgery and waking.
They still are unsure as to the cause of this liver failure. They’re only four or five children in the United States a year who experienced this, it is rare and random. She tested negative for the flu so the working theory right now is that she contracted some sort of virus that her liver was unable to handle and it just gave up. Once she wakes from surgery, and I have faith that she will, the next step will be praying that the liver is not rejected over a period of time.
I see God working miracles during the situation and I’m certain that he will continue to work miracles in her recovery. We will have to live in Seattle for sometime following the surgery and it will be difficult on our family. We have amassed already close to $10,000 in expenses that are not covered by insurance and we will have many more expenses to come for travel and housing. We will have to spend the holidays here which will be difficult on Christine and Eva both. I’m very concerned for Christine during this time. She’s struggling between her concern for her sister and feeling insignificant as she stands in the shadows of Eva’s needs.