Day 101

It seems like frustration is never-ending around here. This past week, Holden's BUN has been creeping up, we think due to dehydration. In response to that, the doctors decided to cut his diuretics. I was against it, and was very vocal about my opinion, but the doctors went ahead anyway. My concern was that cutting his diuretics when he's already on oxygen would only increase the fluid in his lungs and cause more respiratory issues. We noticed last night that his face is puffier than usual, his breathing was labored and rapid for most of the night, and his xray showed a white-out again. All of this means that he's retaining fluid and putting more strain on his lungs and heart. The doctors decided this morning to go back up on his diuretics, and possibly even add IV diuretics to get back ahead of the edema. This is all really frustrating to me, because I feel like they should have listened when we told them this is what would happen. I know that they're the ones with medical degrees, but we know our child, and we've been down this road more times than I like to recall. We know exactly what happens when we decrease his diuretics, and unfortunately we were proven right again. It's hard to triumph in being right or to even do the "I told you so" dance when Holden is the one suffering the consequences. :(

His vomiting still isn't under control, but it's really episodic now. He'll go for hours without throwing up, and then have a few hours where he throws up over and over again. We had hoped that this new combination of meds would be the magic combo, but it doesn't appear that they have helped much. I suppose we should be thankful that he's not throwing up around the clock now, instead of focusing on what's still wrong. Something to think about...

Something else to think about (I'm a master at the segue :)... Until the testing and screening I talked about in my last post becomes mandatory, you should know what to look for in your baby or child to indicate a problem with their heart. Some babies, like Holden, are almost completely asymptomatic, so it's vital to see a pediatric cardiologist if you or your pediatrician notice anything wrong at all. The most common symptom is slow/difficult eating, so pay attention to your instincts if you feel like something is not quite right. Other signs and symptoms may include sweating while eating- due to the exhaustive effort, excessive sleeping from constant fatigue, labored or rapid breathing due to build-up of fluid in the lungs, and cyanosis- a bluish tint to the skin, lips, nails and extremities. Your child may have all or just a few of these symptoms. And remember, most heart defects don't cause chest pain or any other painful symptoms.

I hope nobody I know and love ever needs this information, but please keep it in the back of your mind. If it helps even one child, I've done my part. :)