Friday, July 31, 2009
I called the surgical scheduler today and she said to call back on Monday. This is causing some stress. I don't want to find out Monday that his pre-0p appointment is Tuesday morning and surgery Wednesday. Since they deal with all the time I don't understand why they could not set it up yesterday when we there. We were there for several hours. On a positive note at least this time around we can prepare. When I went into preterm labor I had no idea that Abraham would be born and we would deal with hospital life for 3 1/2 months. The scheduler told me 2 night stay. This is different than what the doctor told me. Please pray for no complications or developmental set back. He has came a long way but we still have an uphill battle to fight. He has came a long way Also the hospital has AC so during hot weather would be a good time. I really, really, really don't want him to have the surgery at all however I have no choice. Eventually it could be life threatening to not have it. Right now his fontanels, soft spots, are open so this allows for increased volume of cerebral spinal fluid. The neurosurgeon that said that if any adult had the size ventricles Abe has that he or she would be in a coma. We are not bringing Abe to church this week or for a while after surgery. I don't want to risk infection especially since one incision will be directly into the brain and one in the abdomen. Just when we start becoming more social and feel somewhat normalized he needs this procedure. We finally were able to schedule with the GI clinic after a month of calling and being told "we don't have any clinical or a referral". I got a letter from Tricare with authorization June 25th. Thankfully a Tricare case manger and the Naval peds clinic discovered that the referral got lost in the documentation. The earliest appt is August 28th. I am concerned that they will refer for surgery for a G-tube placement. I really don't want him to have this. I am starting to question his quality of life now. Right now he is responsive to outside stimuli however will this remain or will he become a "vegetable" and have no quality of life.
Posted by Karen Goddard