Monday, September 18, 2006

Three more days

Only three more days of IV Vancomycin. Yeah!! Mark will be so happy. Since Mark was at the hospital when they did the training on the broviac, he got to learn how to care for it and administer the vanc -- so, I figured I'd pass on the training and let Mark handle it. I haven't had to deal with the broviac/IV meds at all. It's unusual for me to give up just a bit of "control" and for Mark to handle a "nursing" task. As Mark will be the first to tell you, eight years ago he would get lightheaded just walking into a hospital .... now look at all he can do!

Jack's broviac site looks marvelous ... thanks for crossing all appendages on his behalf (and for the prayers too). As for how long the broviac will stay in - I'll request for at least another month just to make sure he doesn't spike a fever or give us any other indication that there is still an infection somewhere in his body. I'm not sure who will take it out. I'm going to ask for a CT surgeon since a CT surgeon put it in. I'll have to see what my pediatrician has to say. I suspect it will be near impossible to find someone to take it out -- since they won't want to touch someone else's "work".

I got an email from Jack's neurologist today asking if I'd give consent for her to check a sample of Jack's DNA from his frozen muscle sample that she has been saving in her lab. She is going to look for a gene mutation in a particular protein. I think it is awesome that she still has Jack in the back of her mind and continues to try and figure him out. She said they will be sequencing the whole gene so it will take at least six months before I'll hear if there is a defect in the gene. At the end of the day, it is just "information" ... something I so desperately wanted 8 years ago. It doesn't mean so much to me today. But, it might help someone, somewhere along the way.

Jack is very happy these days. If only I could capture 1/100th of his patience and contentment with life ....

I'll post some updated pictures soon.


Anonymous said...

woo hoo!! glad things are looking up!!!

can't wait for the new pics:)

xo christina

julie worthington said...


So glad to hear things are getting better and our Jack is happy and smiling again. Looking forward to seeing the pics soon.

Love Julie

Melisande said...

Oh, that's good! It's been quite a journey and we'll continue to hope and pray he won't need any more ABs.

Wonder what the doc is looking for? That will be interesting.

Anonymous said...

I hope you all can have some smooth days ahead! Glad to hear the antibiotics are coming to an end. (Red Man Reaction- No More!) Keeping the broviac for a while is a good decision. It can be very handy for labs and such.


sebby said...


good to see that famous smile back!

i'm keeping jack (and all of you) in my prayers...maybe i'll add an extra one for your little future military school grad!! :)...actually, menna will be right next to him, so make sure and send him to a coed school.