On the night of August 6th, our daughter, Olivia was coughing throughout the night. We thought she might get Levi sick so we decided we would take her to the doctor in the morning. When she woke up it was like the cough didn’t exist, so I quarantined her and decided she didn’t need to go. I talked to Angel, my husband, over the phone while he was at work and told him she was fine. He thought Levi might need to go instead because he had a bruise on his back that wasn’t going away. I agreed and took him to see his pediatrician. While at the office we talked about his bruise, feeding and the superficial cut in his nose that made it look bloody. When my questions were answered, she asked, “do his eyes look yellow to you?” I said yes and we agreed to draw blood to be sure these three things were coincidental. 24 hours later she called and told us Levi’s liver enzymes were elevated and he needed to see a liver GI immediately.
Nightmare at VCU
On Wednesday, we took the drive down to VCU, which began 48 hours of torture for our son. He was repeatedly pricked by the staff there in attempt to draw blood. One “hero” nurse or doctor after another came into the room thinking they could do what the last one couldn’t. He was pricked 13 times without drawing blood, our baby was limp and broken by the time they were done. We finally (and far too late) said no more and that we wanted to be transferred to another hospital, that the staff at VCU could no longer touch him. Then the threats began. “If you take him insurance won’t cover your stay at VCU.” “We’re sending in the social worker….” We felt helpless. At 2am we paged another doctor at INOVA Fairfax who told us to get out and that we did have options. He would take us up there. We waited until 8am to get insurance on the line, verified coverage, and got our things together. Soon after, the GI came in and advised that after reviewing Levi’s initial labs, INOVA wanted us to go to Georgetown to the Pediatric Transplant Unit. They were authorizing medical transport.
Levi was not coagulating. So for every prick, there was a huge bruise and a trail of blood. She didn’t want to risk us driving with him (I’m thankful she put her ego aside and did what was best for Levi).
Finally Getting Help
When we got to Georgetown 5pm Friday, they were ready for us with a plan. They sedated Levi and put in a PICC line. Over the course of that week, Levi had countless labs drawn, received vitamin K intravenously, had FFP, got a blood tranfusion, and was given lots of other vitamins. They did a liver biopsy, echo cardiogram, MRI, 2 ultrasounds, 3 xrays, a DNA test and an eye exam.
We were given the heartbreaking news on Thursday August 17th, that Dr. Kaufman believes Levi will need a liver transplant. He believes the DNA test will confirm this and expects to have it back in 3 weeks. The DNA will determine when (we prefer if) the transplant will happen and whether or not a living donor is an option.
We are praying he is wrong and that there is a treatment for Levi’s condition.
Presently Levi’s liver is not absorbing vitamins so we are giving him 4 different supplements (doses much higher than you would expect for a baby) and 3 medications. Levi’s liver is not processing bile correctly. It is not getting rid of the bile. This is causing his jaundice like appearance and intense itching. The DNA that came back for Levi was inconclusive with just one genetic mutation. The team at Georgetown believes he presents as PFIC2.
We continue to trust and believe that Levi can and will get better through healing that can only come from our Creator!