Monday, March 2, 2009

Update

Wow, talk about crazy. I apologize in advance for not updating yesterday, but when the "stuff" hits the fan, it's messy and not easy to put into words...at least not on a family-oriented journal! Although I know there are those of you who are interested in and concerned about the mismanaged nightmare we've been experiencing lately, suffice it to say that we've let everyone know where we stand now. Strings we didn't want to have to pull have been pulled, and we are finally getting the cooperation we have been needing.

First, important health info. I was wrong about his line infection. Keegan's peripheral blood draw (from a vein, not his central line) also grew back positive for staph. Again, it is a common staph found on our skin and a constant battle for people with central lines, especially the immunosuppressed. It is not generally one that results in sepsis or severe illness, but it unfortunately has a tendency to build a film on plastic, i.e. Keegan's port. You can treat the infection in the blood, but there's not much you can do to get rid of the colonization on the line itself. Hem/onc generally treats through these types of infections and lives with them. However, Keegan has now met the magic number of three infections, and we will have to discuss soon the possibility of needing to pull his port and place a new one. You may remembr that this is a difficult decision for us. Although Keegan has only had two lines before this, his prior surgeries, cannulizations, catheterizations, and life support measures limit the number of access points we have. We're not to that point yet, but it is something that has made our ability to have Keegan transferred a little more dificult. That's about the only change medically for now. His bloodwork is still all over the map, spleen's still enlarged, and still not responding the way they would like to his GCSF. Of course, he still has all his ongoing GI issues also.

I hope not to jinx it by putting it in writing, but we should be on our way to Children's Hospital of Boston on Wednesday. We personally did a lot of work on getting it all taken care of over the weekend and lit some fires today to get the rest of it worked out. We are meeting with the transport team tomorrow to discuss details of the flight. Keegan had an echo today to make sure his heart was ok before we flew out, and it looks beautiful. We cannot thank God enough for protecting the most important part of our Bug! Ok, more info tomorrow. Got a little boy drunk on sedation from his echo to take care of now. Thank you so much for your prayers.

Maddie

p.s. HAPPY BIRTHDAY, BIG DADDY!! We love you!