I can't even begin to express how good it feels to have been at home, together as a family for 10 days! Do you hear me -- Ten Days. We have had such a wonderful time this past week. I made up for lost time with the kids and crammed in just about every activity on my to-do list. We had a blast!
Gavin is doing ok but of course he has been running fevers all week! If he has some type of infection the fever's should just keep getting worse, but they aren't. So we are crossing our fingers and hoping that the fevers are from his autonomic dysfunction and not infection. Time will tell. I have a goal over the next few weeks to get Gavin's J-tube drainage bag clamped. By having it draining all the time it just promotes his already bad motility. The only negative is that this could put him at greater risk for translocation -- but we really don't know that for sure. Before we start that process we are trying to get rid of some of the bacterial overgrowth in his small bowel. Not that you really need to know, but his J-tube drainage smells like rotten eggs -- so gross. We'll see how things go.
Thanks to all who participated in the blood drive for Gavin this past weekend. I'll try to get some of those photos up soon.
Keep praying for yet another week at home!