A pretty quiet morning this morning! Last night was another hard night. We finally understand Alex's irritability and trouble sleeping. His ammonia levels continue to rise. It is caused by Alex having trouble metabolizing the TPN. However, he needss the TPN for his nutrition so we are kind of stuck. Dr. k feels pretty strongly aboutn not giving Alex anything to help him sleep since we know the reason for it and we know what a GREAT sleeper he is at home. However that leaves both of us really exhausted. We only got 4 hours of sleep last night. His legs will not settle down to let him rest. Poor baby.
We are having a 24 hour EEG today to watch his brain waves and see if we catch any seizures. We are expecting it to be completely normal. Dr. K and I both think that Alex will have seizures when his body is very stressed or he is getting sick, but noth normally. We will not treat them if this is the case.
Alex's surgery to change his button is scheduled for next Wednesday. We will be discharged sometime the following week.
Please continue to pray for us. Specifically for Alex to be able to rest so we will both feel better.