After the last scary hospital stay, we didn't really get a lot of answers from hematology about what is going on with Jacob's blood. His blood values stabilized after about a week, and we might never know for sure if it was caused by some of his medications or the infection he was fighting or both. We will work with Jacob's specialty doctors to decide what to do with the medications he is on which can cause issues in his white blood count. Jacob's hematologist is not worried about his bone marrow, which we are very happy about.
We also don't know why Jacob suddenly couldn't metabolize one of his seizure medications, which made him incredibly sedated. All his current and recent medications were cross checked with the seizure medication. Jacob's liver function has been closely monitored since we got home. We have also been checking the level of this particular seizure medication in his blood weekly.
We were doing well for two weeks. This week the seizure medication was at an incredibly high level in Jacob's blood once again. You and I would be in a coma. Jacob not so much. He was still breathing well, and going on with his day, but he was definitely more sleepy. He was in a stage between sleeping and awake for hours. I hate to see him that way.
Over the last couple of days we have started to drastically reduce the seizure medication. We need to find the balance between lowering the level in his blood as quickly as possible with keeping seizures and withdrawal at bay. With the help of our nurses and Dr. C. we have been able to manage this from home. It might mean a trip or two a day to Children's before the sun is up, and busy days at home and on the phone with doctors, but it is so much better than being inpatient.
The big question is why this is happening. The answer is we don't know. It could be a medication interfering with this seizure medication, it could be a medication taking away that was stimulating his liver. The problem is that we haven't really made any medication changes in a very long time. The bigger question is if there has been a change in his liver's ability to process this medication for some reason. Dr. C. has always called Jacob's liver the Turbo Liver. She has been amazed how his liver can spit out seizure medications like no other kid. When other kids are sleepy and sedated after high doses of seizure medications or strong rescue medications, it has never even faced Jacob. When kids need to be intubated being on strong continuous IV seizure medications in the PICU, Jacob is breathing on his own.
We are all worried if his liver function is now changing and what it means to Jacob and his overall mitochondrial disease. We are looking for answers where there are no obvious ones. In the meantime, we will continue to manage labs and medication changes on a daily basis, and hoping that it won't get out of control. I will say that I am slightly optimistic that we will have better labs in the morning, since Jacob had a pretty good day today, and is more alert again.
I wanted to end the post with Jacob showing off his new Mito hat made by another Mito mom. Jacob is ready for colder temperatures :-
I am hoping I can report some better news next time!