5 Days Post Surgery Update

I just wanted to send a quick word out that Elle is doing well!  She seems a little weaker in her core and neck strength the last few days and she's been fussy and restless a little more than usual.  But overall she is doing great and her incisions are healing well.

The surgeon had to shave Elle's head - a lot - in order to have a clean surgical field where he took the old port out and also on the other side of her head where he put the new port in.  After much brainstorming on how to fix her hair, I trimmed about 6+ inches from her super long hair and we are doing a lot of 'Milla buns' and headbands to cover up the incisions/scars/shaved head.

(For those of you who may not understand what 'Milla buns' are :) it's what we call pig-tail buns on the top of the head because I put Milla's hair in those buns much of her last 3 years as her hair was so curly and wild and that kept it out of her face.)

We are so thankful we went ahead and changed the port out with a new one...the old one had a sizable hole in it. It definitely would not have been good to have another infusion with the old one.

We are still on schedule to have Elle's 45th infusion tomorrow morning.  We don't know if we will see a difference in Elle' condition with the new port but anything is possible.

Also, we have a new night nurse starting this week!!  For now, we will still have no help on Saturday nights but 6 days a week is sooo much better than 3 days a week!  

One more big reminder!  Miles 4 Milla's House is THIS SATURDAY, the 19th at Wiseacre!!  Feel free to ride bikes, walk, run or just come for the party!  The family ride (I'll be walking) starts at 10:15 and the party starts at 11.  Rain or shine, it will be a blast with good people, good music, good beer and good food.  Please help us support the Memphis community by supporting Milla's House Center for Good Grief!!

Go here to sign up or donate:

www.miles4milla.org

Much love and THANKFULNESS for all your prayers and encouragements!

Dana

Quick Post-op Update

Elle’s surgery went well! We are in a room and she's sleeping right now.  She is running a little bit of a fever and having a lot of seizures but all in all, she is doing fine.

We will stay the night at LeBonheur and should get to go home tomorrow barring any complications.

Thank you for continually lifting us up!

PS - for those of you that didn't know, Elle's surgery was cancelled yesterday and scheduled for today because the hospital had some emergency cases come in.

Surgery Bumped

Hey everyone - I just wanted to let everyone know that due to an emergency that came up, Elle's surgery was bumped to tomorrow at 2:30.  

Please continue to pray for her and that she will have patience and understanding as much as she possibly can tomorrow!  And of course for safety and her doctors and nurses, etc.

Thank you!!

Dana

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