September 10, 2010

We got the greatest news yesterday when we went to visit Benjamin... he's coming home on Tuesday! We're still in shock because we didn't think this day would ever come. We've watched so many families around us leave with their babies and finally, after 6 long months, it's our turn.

We thought he would be in there for at least another month because he was going to have his hernia surgery, but his surgeon pushed it off for two reasons. The first is he still has some fluid in the area and she's afraid doing the surgery now will leave more of a scar than she would like. The second reason is he started two medications (Klonopin and Neurontin) for his spasticity (rigid tone from his brain injury) and she doesn't want to risk putting him under anesthesia until his body has adjusted to the meds which can take weeks. Bottom line is he belongs at home and it's time!

You hate to see your child on such strong drugs, but I have to say they seem to be working. He's not arching as much and he looks more relaxed and less agitated. Usually when we walk into the unit and he's not sleeping, we find him arched and screaming. Today I walked in and he was in his crib just chilling and smiling away. He was going to be fitted for a back brace, but because he's not arching as much, PT doesn't think he needs it right now. That's such a relief because the brace would wrap around his abdomen and we were told it would be horrible for his reflux.

Ryan and I have a lot of work cut out for us over the next few days. We're going to refresh ourselves on how to perform infant CPR, we need to paint Benjamin's bedroom, put the crib together, buy his carseat, learn g-tube care as well as how the feeding pump works and how to administer his meds, book follow-up appointments, fill prescriptions, etc.

I can't even believe that months ago, when we were talking about that day in the distant future when he would come home, we were told he would be coming home on oxygen, with a monitor and would need up to 80 hrs./week of in home nursing. He's NOT coming home on oxygen, he's NOT coming home with a monitor and he might get a visiting nurse to stop in for maybe a week. We're not going to get much sleep, but we could care less. We'll be able to pick him up without tripping over wires and more importantly we're going to get to bond with our baby and finally be a family.