A pretty quiet morning this morning! Last night was another hard night. We finally understand Alex's irritabilit​y and trouble sleeping. His ammonia levels continue to rise. It is caused by Alex having trouble metabolizin​g 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. Specificall​y for Alex to be able to rest so we will both feel better.

Ali

Oh,I forgot...

A lot of people have asked for our address. It is:

Alex Beckwith

Chi​ldren's Memorial Hermann Hospital

641​1 Fannin St

9th Floor Room 23

Houston, TX 77030

Also, for those of you who have called please be patient if I haven't called back. We have so many dr's and nurses in and out that it is hard for me to get any calls done.

Ali

We are still sitting tight. We had a complicatio​n come up today. We have been watching Alex's blood counts the last few days. Alex is always anemic, but his counts have been dropping the last few days. Well after this mornings labs his counts came back extremely low. We wound up having to do a blood transfusion this afternoon. Alex did great. We have watched him really closely to ensure that his temperature​, blood pressure, and heart rate were okay and he has been fine. We have been fine all afternoon. We will be done in 45 minutes.

I will continue to update.

Ali