Surgery Next Week

Hey there, all!

Elle had her 44th infusion Tuesday and we ran into a glitch. Her port (it goes into her brain to deliver the enzymes) started to leak.  Thank God they figured out a way so that she got most of her enzyme infusion but we are going to have to replace the port.

So next Tuesday, she will be having surgery to take out the bad port and put in a new one on the opposite side of her brain.  We aren't sure why it stopped working - it should have lasted another couple of years.  They did a CT scan Tuesday just to make sure nothing had broken off or dislodged and the scan looked fine - so there's no emergency in needing to get the port out.  And there are no signs of infection.  Whew.

Her surgery is at 11:30 so please pray for fortitude for us as Elle can't eat or drink after midnight.  She usually eats 2 or 3 breakfasts between 1am and 7am so this is going to be very difficult for her as she can't understand why she won't be able eat or drink.  She is cognitively around a 2 or 3 year old level - with a 6 year old body - and the strong will and feistiness of a wild animal. :)

Tuesday, she will get a CT scan and then the surgery and then will stay in the hospital for 1 night.

Please also pray for good wound healing and healing in general and no infections in order to be able to get her next infusion on schedule (the following Tuesday).  Also, as you all know, any surgery for any person is not without risks, but for Batten kids, the stakes are a little higher because of their weakened immune systems and weakened muscles among other things.  There is always a nervousness with anesthesia and breathing tubes - having trouble breathing on her own after they remove the breathing tube.

Please continue to pray for a night nurse as we still don't have one for 4 nights/wk.

Thank you all so much for all the kindnesses and love and encouragement!!!  Much love right back!

dana