Tuesday, August 16, 2011

The last trip of the summer

The Murray’s have done a lot of traveling this summer. Cincinnati in June, Los Angeles in July, Casper in July/August, and now we’re headed back to Cincinnati.

This week we’re heading back to Cincinnati for Ella to have surgery. She’s going to be getting 2 cavities filled (and all that goes along with a standard trip to the dentist…x-rays, teeth cleaned, etc.) as well as have her first esophageal dilatation.

Unfortunately EB affects the mouth, which means her teeth are compromised. No one likes to have cavities filled, but we know it needs to be taken care of. The truth is that while I’m scared of Ella going into the OR and being put under, there’s a part of me that’s really relieved that she’s going completely under for her dental work. I don’t even want to think about how terrible it would be to hold her down while she gets 2 cavities filled.

EB affects the throat as well, so sometimes eating can cause blisters and sores inside her esophagus. Once these heal it causes a scar, similar to those on her skin, which sort of shrink her esophagus. They call this a ‘stricture.’ So at one point in her throat she has a stricture of 70%, meaning that her throat in that one area is 70% closed. Really, this isn’t nearly as bad as it could be and she’s still able to eat with few problems, but considering that she hasn’t gained any weight, we want to get the stricture taken care of and see if we can get her back on the growth chart. The hope is that once the stricture is out of the way and she’s able to swallow without any discomfort, then she’ll start eating more and plump up. This procedure (a dilatation) is very common among kids with Ella’s type of EB, and the truth is that it’s kind of surprising that she’s made it to 4 years old and this is her first one. That said, it’s still major surgery.

We have decided to drive to Cincinnati since we don’t know how she’ll respond to the surgery and we don’t know how she’ll feel afterward, so please pray for safe travel and that Ella doesn’t get too stir crazy in the car.

Also, please pray for the doctors. We go to Cincinnati for Ella’s treatment because they have doctors who know how to handle kids with EB. The surgeon doing her dilatation has treated thousands of kids with EB and has perfected a procedure which causes the least amount of damage with the quickest recovery. We are thankful to be working with an anesthesiologist who understands EB and also knows how to handle our special kids. The dentist also knows all about EB and has worked with EB kids before, but unfortunately any dental work is going to cause damage in the mouth. Please pray that these doctors have steady, gentle hands and that Ella leaves the OR with as little damage as possible.

Please pray, of course, for sweet Ella. At this point we haven’t told her anything that’s going on. All she knows is that we’re going to Cincinnati for a trip. I guess we don’t want to get her freaked out too early in the game. She will have to stay in the hospital overnight, so please pray that she’s not too overwhelmed by the nurses coming in and out of her room. Of course Joe and I will be there with her the entire time, but sometimes that doesn’t help. And please pray for Joe and me to be comforted and make the right decisions for Ella. It doesn’t matter that thousands of other kids have had these procedures done, we’re still nervous. She’s our precious girl and we want her to be as safe and protected as possible.

All this said, we could really use your prayers this week. Thanks a million!


Linda said...

Hi Katie: Of course we will all be praying for your precious daughter. Any kind of surgery is scary, but especially when EB is involved. Hoping and praying for a safe trip. Give Ella a hug for me. Take care guys. Love and Peace Leah's nana

Donielle said...

prayers by the dozens coming your way. XO

Aumi said...

You, Ella, and Joe are in our prayers. We have been thinking about you and praying for you. You are the topic of lots of great conversations also! The Perry's are your big fans. The painting is pretty much finished. I am grateful for the time I spent with you and Ella. Love you, Aumi

Anonymous said...

We will send extra prayers for safe travels and a smooth surgery for Ella - and peace of mind for Mom and Dad! We'll be anxious to hear how it went.

Adrienne Provost (Caroline's Mom)

Bob Carlin said...

She's an absolute angel! Abundance of prayers from this side.

Love, the Carlin's