We just wanted to share with everyone an article from the front page of the Boston Globe about Ellie Brogan and her Omegaven journey. Ellie's website was one of the first that we found after Sam was diagnosed with Microvillus Inclusion Disease and reading her parents journal entries were what convinced us that going to Boston was what we needed to do.
Thank you to Abby and Gib Brogan for getting Ellie's story out there for other parents to find and helping to continue to spread the word about the miracle we, and many others, have experienced with Omegaven.
Read the article here:
http://www.boston.com/news/local/massachusetts/articles/2009/01/09/old_fashioned_lifeline/
Tuesday, January 13, 2009
Friday, January 9, 2009
Back Just In Time
Sam and I made it back to Wisconsin today, just ahead of another snowstorm in Boston.
We had a very good clinic visit in Boston this week. Everyone is impressed with the progress Sam is making. His weight gain has slowed to almost nothing, which is of a small concern, but they will be boosting his calories to try to get him to start gaining again. Due to a mix up at the clinic, we don't have lab results for Sam; we will have to have labs drawn here next week to see how they look.
This coming week we will get to increase Sam's unhooked time from 5 hours to 6 hours. They want to keep pushing Sam's unattached time up an hour each visit and surprised me by telling me that they believe that we can probably get Sam up to 12 hours off eventually. I will believe that when I see it, that just seems like an awful long time to have no fluid or nutrition going in.
We have been experimenting with Sam's reflux medication over the last few weeks and it is going so well that they will be adding it right into his TPN bag for us so we won't have an extra medication to give him every 12 hours.
We had a very nice trip home today, Sam and I got bumped to first class and Sam took full advantage of the extra room by sleeping for the entire flight from Boston to Milwaukee.
Tomorrow we will be traveling down to celebrate Christmas with my mother's family. No time to catch up on rest, but that is in the works and we have received some help with getting some respite care into our home (hopefully soon) to give us a little break. Maybe we can finally find time to finish moving in and get the house clean...
We had a very good clinic visit in Boston this week. Everyone is impressed with the progress Sam is making. His weight gain has slowed to almost nothing, which is of a small concern, but they will be boosting his calories to try to get him to start gaining again. Due to a mix up at the clinic, we don't have lab results for Sam; we will have to have labs drawn here next week to see how they look.
This coming week we will get to increase Sam's unhooked time from 5 hours to 6 hours. They want to keep pushing Sam's unattached time up an hour each visit and surprised me by telling me that they believe that we can probably get Sam up to 12 hours off eventually. I will believe that when I see it, that just seems like an awful long time to have no fluid or nutrition going in.
We have been experimenting with Sam's reflux medication over the last few weeks and it is going so well that they will be adding it right into his TPN bag for us so we won't have an extra medication to give him every 12 hours.
We had a very nice trip home today, Sam and I got bumped to first class and Sam took full advantage of the extra room by sleeping for the entire flight from Boston to Milwaukee.
Tomorrow we will be traveling down to celebrate Christmas with my mother's family. No time to catch up on rest, but that is in the works and we have received some help with getting some respite care into our home (hopefully soon) to give us a little break. Maybe we can finally find time to finish moving in and get the house clean...
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