[devildogwife]

Originally Posted by mommamarci

I think I am most worried about the recovery period. Cameron is a very active kid. he climbs constantly. He falls a lot and then laughs and gets up to do it again... So, I am worried about how he will survive the recovery period.

With your daughter, how long was she in the hospital for her surgeries? How did she handle recovery?

I know your questions were directed at Suz, but I should be able to answer some of them. Cameron was just hospitalized for the 6th time and is always on a "heart" floor when he goes in. There was a 3 year old boy who I saw walking around with his parents and SMILING who had just had his 3rd and final stage for HLHS. Cameron has had 4 major, major open heart surgeries and for the last one, he wasn't kept on pain meds for more than 3 days. Kids really heal so quickly and his nurse practicioners have told me they really don't feel breast bone pain for as long as we think they do. However, between surgeries 3 and 4, Cameron was so tolerant to sedation that when he went back on the vent (like the 7th time), he had to be paralyzed with a med called Vec, or he could have really damaged his vocal cords. But with your son not having narcotic issues, it shouldn't be a problem.

For Cameron's first 2 open heart surgeries, he was in the hospital for 1 month. The second 2, almost 4 months. The hospital stay depends on so many things; how sick are they going in (my Cameron was VERY sick), how long are they on the ventilator is key! Really, it it's not a complex CHD (like HLHS), you probably won't stay there months on end like we do.

There was a thread from a few months ago started by Tweety, that Suz and I contributed too. I'll see if I can link it. That will give you lots of ideas for the hospitalization.

Also-feel free to pm me too about Cameron's care page.

ETA-here's the thread:

Helpful Hints for Hospitalizations