Lisa Santos’ Parent Diary: January 2008
Matthew is back at Children’s Hospital again. He went back up to visit his Neurologist on Wednesday for a routine appt. only to end up in the ER after the appt. with out of control seizures. They gave him some medication to quiet the seizures but that has had an effect on his respiratory system. Matthew is not breathing as well as he should and he is requiring oxygen to help him. The seizures are still uncontrolled and we are not sure at this point what direction he is going in (home or for another extended stay at the hospital). If he comes home soon, he will be receiving nursing services to support Scott and I in his care.
We are tired and scared. The staff at Children’s is very helpful but it is an awful feeling to watch your child be so sick. The doctors tell us that there are other seizure meds that they can try to help him, but we have to wait to see if the meds he is on will be effective as they adjust them. Despite it all, Matthew continues to exhibit a sense of humor and strength. He is a brave soul that inspires us through it all.
Lisa
**Read the update on Caring Bridges for Matthew DeSimas at the link below
To view more updates about Matthew go to http://www.caringbridge.org/visit/matthewdesimas
**CaringBridge is a free, nonprofit web service that connects family and friends to share information, love and support during a health care crisis, treatment and recovery.