Wednesday we brought B in for his regular IVIG therapy and also a blood transfusion since his hemoglobin was at 6.7. We spent the day here, he got his infusion and blood and after about 12 hours or so we went home as usual. Then yesterday morning we got B up for an appointment with the feeding clinic and were immediately concerned about his color. He was looking jaundice and still a bit pale.
We brought him in to his appointment but while we were waiting I called the nurses on the hematology floor and explained to them my concerns. They grabbed the resident on the floor who told us to take B up to the hematology NP, Lynn, after our appointment. We went up to see Lynn around 11:30. She drew some labs, told us to grab some lunch, and she'd meet us in the waiting room in about an hour with the results...
The results were not good. Brady's hemoglobin was only 7.6 (less than 12 hours after a blood transfusion), his liver enzymes were very elevated, and his total bilirubin had gone from 2.1 to 6.9 in less than 24 hours. (A normal bilirubin level would be >1.) Lynn told us they were going to be admitting him and we needed to head down to the ER so they could do an abdominal workup. The concern was that he may have some kind of blockage in his liver.
We got down to the ER around 4 and were told they didn't have a bed for us. The charge nurse there sent us up to the heme-onc floor. When we got to 4 they told us they were completely full and B was supposed to be in the ER. We explained that they had sent us up, some calls were made, and we were shuffled back down to the ER. Since B is immune compromised we were held in a triage room until there was a bed available for him.
Once back in a room they drew TONS of labs and sent B for an abdominal ultrasound. The ultrasound looked clean but his labs were getting even worse. We we're told we were being admitted under the GI service but they weren't yet sure if he needed to go to the PICU or could go to a regular bed. Finally, about 8pm the decision was made to send him to the floor. Since the hemot floor is full we were put on Variety-8, Brady's old stomping grounds!
And here we are! The nurses put us in a family care suite (much bigger than a regular room and with a bed for mommy) and got us comfortable. Overnight they held his IV med and gave him another blood transfusion. When I got him up for a diaper change around 3am I thought his color was starting to look better and this morning the GI fellow said that his labs have improved slightly. His hemoglobin is up to 9.9 so at least that's good for now. He'll go for a more thorough ultrasound sometime today and they're running blood tests for metabolic disorders, hepatitis, epstein-barr, and also to check to see if he's producing any antibodies against the liver.
We've been told not to expect to be able to go home today. For now, that's all we know. If something significant comes up I'll be sure to update. Until then, please continue to pray for Brady!
With Love, Shari ♥
No comments:
Post a Comment