Wednesday, January 13, 2010

Another Long Day

We were able to do the gastric emptying scan today and it apparently showed 3 minor instances of reflux. Unfortunately, we are not exactly sure what that means. Collin does have a herniated Nissen we discovered, so reflux could mean milk going up into the herniated part of the stomach or it could mean actually getting up past the Nissen into the esophagus. Big difference. I will be chasing down a surgeon (or maybe a radiologist or maybe both) tomorrow to find out more helpful details. At any rate, our options as described by the surgeon are: A) Do surgery to fix whatever is wrong with the Nissen; and B) Start a trial of low flow feedings, hoping that these 2 days of no food have allowed his stomach to heal somewhat. I'm not sure what the long-term advantage of option B is, but we actually chose that one, more as a way to buy time than anything else. Our hope is that Collin will tolerate this method well, which will enable us to get out of the hospital so we can hightail it to Cincinnati to get a second opinion. It just doesn't seem like a viable option to send Collin into surgery to fix a problem we don't even fully understand.

During his gastric emptying scan, Collin started having seizures again and we have been unable to stop them so far. When the neurologist stopped by this afternoon, he confirmed my suspicion that the incredible stress to Collin's body from the retching, the not eating, not sleeping, and being in a strange and stressful environment have most likely triggered these new seizures, which have proved to be so hard to control. Even with a dose of Ativan, he still has not been able to fall asleep for more than a few minutes yet without waking to a seizure. He is also continuing to have mysterious episodes (only while sleeping) in which his oxygen saturation levels drop very low. Kyle has sent for the doctor on call to discuss our options concerning both of these things.

I say that Kyle has sent for the doctor because I'm actually at home. Having gotten about 3 hours of sleep in the last 3 days, I was starting to break down, but it was still hard to listen when Kyle urged me to go home. So I'm lying here on the couch because I'm too sad to sleep upstairs alone, my stomach gurgling with anxiety about what might be going on at the hospital, trying not to waste too much energy wishing things were different.

1 comment:

  1. Second opinions are definitely a good option. Hope you have gotten some sleep. Collin needs you to make the best decisions for him and rest and a clear mind are necessary to do that. May God use this episode to guide you for the future. Still praying for all of you.