|
| February 13th, Alex our youngest, was admitted to St Francis Children's Hospital because his bilirubin was elevated making him Jaundice. His liver enzymes were also elevated. Upon initial exam, the doctors were concerned about keeping Alex hydrated, so an IV was placed in his arm. After drawing some labs, they found that Alex's Liver, Spleen, and Pancreas were swollen, and displaced 2-3mm from where they normally live. |
|
|
They drew labs every twelve hours to check levels as well as running other tests. Not knowing why they had to draw so much blood was frustrating. First, they ruled out viral infections, and in the process, they found he tested positive for RSV (Respiratory Syncytial Virus, a respiratory infection), as well as Pneumonia. This happened over the course of a week, during which time I stayed with him in the hospital. Even with the two respiratory infections, Alex's oxygen levels were staying in a good healthy range and they saw no need to treat. He has Asthma, and we have been in and out of hospital with breathing issues, so we took this as a great sign. |
| Wednesday, February 18th, Alex's red blood cells became very low, and he was given two blood transfusions. The doctors told us they didn't know what caused this, so they wanted a liver biopsy, and since he would be sedated, they would like a lung biopsy too. After hearing that they would open Alex's chest cavity, and remove a nickel size chunk of his right lung, then place a chest tube in, and then put him in ICU to recover, we opted to forgo the lung biopsy and go ahead with the liver. |
|
|
Friday, February 20th, the pathologist came back, and said Alex has Giant-Cell Hepatitis, which they would treat with steroids, and we could go home. We waited, and waited, all day with no news. No one came in to give the steroids. At 6:00 pm we finally got answers. Alex was also diagnosed with Hemolytic Anemia (an auto-immune disorder), in addition to Giant-Cell Hepatitis. This combination of diseases is very rare, with only 27 documented cases. The treatment for the Liver Disease is steroids, and the Auto-Immune Disease is treated with immune suppressors. The doctors are now trying to see which steroids to try. With only 27 documented cases, there isn't a lot of history to go on. |
| It is interesting that Alex's only outward symptom is yellowing of the whites of his eyes. I am grateful for everyone's Prayers and Thoughts. The morality rate for this combination of diseases is high. However, we are hopeful, because it is usually diagnosed when the liver is damaged enough to warrant a liver transplant. Alex's liver has improved to above stable levels. He would be considered not perfectly healthy, but very good. |
|
|
Lauren and Carson have been troopers through this all. Carson loves that, if you pick up the white phone on the wall in the hospital, tell them what your want, they will bring it. Lauren has been coloring pictures to put all over the walls in the hospital room.
Again, thank you for your thoughts and prayers. We are feeling Greatly Loved and Blessed at this time. The Ellis family |