Big things are happening! Hollis was officially added to the United Network of Organ Sharing (UNOS) Waiting List on January 29th so its been a little over 3 weeks now of our hearts stopping at every call. On Friday her team submitted a letter to the National Liver Review Board (NLRB) asking for exception points to increase her score significantly to move up in line. What that means is the NLRB will review the letter from her doctor asking for more points to increase her Pediatric End-stage Liver Disease (PELD) score so that it accurately reflects the medical urgency of her situation. They have one week to get back to the team with the score they have approved and she will be moved up on the list based on her new score. We are asking for a high score mostly due to her excessive itchiness and esophageal varices. We are hopeful her new score will be high enough that we could potentially get the call within a month, which her team feels is certainly possible. Since Hollis’s blood type is O negative it might take a little longer since these livers can go to anyone since her blood type is a universal donor. 

 

So in the meantime, we have been thankful for visits from family and friends to help boost our spirits and lighten the heaviness of this season. We are trying to live as “normally” as possible during our wait and doing our best to remain positive about what life will look like after transplant.  Immediately after transplant we will isolate in order to keep Hollis safe from illnesses since her immune system will be extremely compromised due to immunosuppression medication.  The exact amount of time we need to isolate will be determined by her team and we will gradually start seeing others and leaving the house in the safest way possible. The biggest things family and friends can do to help is to wear a mask around Hollis for at least the first six months and postpone any visits if someone in the house is sick. We have to protect her new liver! 

 

Sweet Hazel is continuing to do well. Her last labs improved but we are still not in the “normal” range. Our amazing liver doctor shared with us that she has patients with the same condition who she sees a few times a year who are thriving and will likely never need a transplant. We pray this for Hazel and remain cautiously optimist for her story. 

 

Thank you all for your continued support and prayers. Although there is a huge sense of dread and fear with the unknowns of what is to come, we are ready to get out girl to the other side. We love and appreciate you all!