Eliza

 Meet warrior Eliza

Eliza was admitted to the hospital for three days at one month old for fevers, a high heart rate, and low blood cell counts, despite being born seemingly “perfect and healthy.” Once her fever and heart rate were under control, she was released, and we were told she likely just had a virus.

At 2.5 months old, we went to the ER again for fevers and poor feeding and were told to continue giving Tylenol and that, again, it was likely just viral.

At 3.5 months old, when she again was having fevers and poor eating, and doctor’s appointments left us with no answers, we knew we needed to take her to the ER again.

Since then, our sweet Eliza Mae has been in the hospital for over six weeks now, with a transfer to Children’s Hospital of Philadelphia (CHOP) a few weeks ago. During this time, she has undergone several procedures, gets daily max labs, and has had many different transfusions.

Last month, she was officially diagnosed with primary HLH. Her doctors have already started the process, with a goal to complete transplant around 6 months old.

They have discharged us twice in the matter of a week, but the first time, within 24 hours, she was readmitted for an HLH flare caused by a failed steroid taper. The second time, we were again readmitted within 24 hours of discharge due to a GI bleed that they also believe to be from her high-dose steroids.

Although it has been a very difficult road so far, just like her blood type, we are trying to “B positive.”