Saturday, May 31, 2008


Nothing new to report for today. We all had a very boring day, which is good... I guess. They determined the bacteria Gavin had in his blood and it was found to be the same bug he grew 3 weeks ago.

His counts took a smaller drop and we will check them again in the morning. Thanks for your questions -- I'll leave it open for another day and then I will be sure to answer them all.

Thanks again for all your prayers!

Friday, May 30, 2008

Ocean City, NJ...


I realized from a comment on my last post that I'm sure you all have lots of questions. If you have questions now is the time to ask them. I don't mind any questions about Gavin or our family. Way to often Adam and I just assume that you all know what we know -- that's unrealistic.

So please ask away. I've got plenty to time to answer any questions you have.


We got word on a positive culture early this morning, growing gram negative rods -- the bad guys. He seems ok but we are seeing some significant swelling in his liver and spleen as well as overall fluid retention. Tonight we are going to try his lipid with a high dose Motrin type med to try to counteract the inflammation the lipid causes. We'll see. Gavin's blood counts also took a drastic drop overnight so we will be keeping a close eye on those as well.

Madison spent most of the day at Child Life playing, and I spent most of my day trying to get my children to sleep. Gavin was up all day and just recently fell asleep. I've given up on Madison's nap and anyone who had a three year old knows that's just bad news.

So the plan is to wait for more information on the bug that is growing and also try to figure something out with his lipid.

Thanks for adjusting to the new site. We hope everyone is enjoying it.

Thursday, May 29, 2008


Well, as many of you have read, we are back in the hospital. Gavin spiked a fever of 105 early this morning and had a very scary episode while driving to the ER. After turning off his TPN he turned a corner and seems to be doing better. Cultures were drawn but we are thinking this is just the MAS or chronic inflammation that the lipid in his TPN causes.

We have made some progress on the Omegaven but have hit a road block and are needing duPont to be willing to fund the experimental drug. Gosh... we really need this to happen. The lipid is keeping him alive but it is destroying his body.

So once again we just wait to see if cultures grow.


Welcome to Gavin's brand spankin new blog. We were having so many issues with his other site we figured it was about time for a change. Now I realize that change is hard for all of us but I really think you will like this new site. We still welcome all your support and comments, but it is done a bit differently on this blog. To make a comment on a post click the word "comment" at the bottom of the post. If you do not have a blog or user name to sign in under, which most of you do not, click the circle next to anonymous and sign your name in with your comment.

Adam and I consider ourselves very lucky to have such a huge support network. Without the prayers and support we get from all of you out there our road would be so much harder to travel. We have included some helpful links to you right that might better explain the medical terms I use in my posts. I've also included a few links on his diagnoses to help better explain Gavin's medical issues.

Please come and stay awhile and enjoy the new site!