January 13th, 2010

Morning

Ok. So today is the big day. Hurdle number one. So far, Lily has gotten through so much! She had major surgery to repair her esophagus. She's been through test after test. Heart, Vertabrae, Limbs, Kidney, Digestive Tract. Aside from the Esophageal issues, we heard good news after all of the tests.

Today's test is the one to see if the surgery worked. Lily will have a contrast dye inserted down her esophagus. Then they will take X-Rays and do a Fluoroscopy (kind of like real-time X-Ray Video) to see if there are any leaks at the repair site.

Nervous. Excited. More Waiting!!

Lynn is our nurse again today and thank goodness. There is a fair amount of stress and her sarcastic wit helps to keep things light. She is also very attentive with Lily, changing her, flushing her tubes, administering her meds. We couldn't ask for a better nurse to care for her.

Lynn called radiology at about 8:30am to try to get Lily in as soon as possible for her test. She was told that all Out-Patients are handled first. They will call her when there's an opening. Lily and Tracy both heard Lynn tell Radiology, "Well if there's a cancellation, you call me so we can get Lily in first!"

Waiting. Agian.

It looks like there are no cancellations. Lily was awake and alert for quite some time this morning. I just can't say enough how beautiful her eyes are when she is looking at you!

Lunch

Tracy's father came up to visit and Lynn said that we all may as well go to lunch. She told us she would call if Radiology came up to get Lily. Otherwise, there's no use hanging around because who knows what time the test will be.

Papa bought us lunch. Thanks Papa!!!

2:30pm

Finally. Radiology called and Lily was on her way to test her Esophagus. Lynn said it could take about an hour when all is said and done (hooking up machines, reviewing the video, etc.) but the procedure itself is only fifteen minutes.

So guess what?

We waited.

3:15pm

I saw Lynn get off the elevator with Lily in her bed. I called Tracy and we literally ran into the hallway to meet her. We could tell from Lynn's face that the news was not good.

"There's a small leak," she said. "It happens all the time. Lily just needs more time to heal."

It was explained to us before the test that there could very well be a leak at the surgical site if it has not completely healed. If this is the case, the doctors said, then Lily will just need a little more time to bulid up the scar tissue and the "leak" should heal itself.

We were devastated, but we tried to remind ourselves that this just makes the road a little longer, not necessarily bumpier.

We walked with Lily back to her room.

4:00pm

Surgeons Dr. Perre and Dr. Walker came in. They told us that right now it's hard to tell if there is a leak or if this is "the original fistula." When Lily was admitted, we were told there were two fistulas (bridge between the Esophagus and Trachea). When Dr. Caty came out of surgery, he told us he only had to fix one fistula. There was not a second. They won't know what the problem is until the Radiologist reviews the Fluoroscopy. Dr. Walker said she has a procedure to do, but she would be back a little later with a more complete evaluation. She did confirm that when the dye was pushed into Lily's Esophagus, there was definitely a small amount that ended up in her Trachea and was aspirated into her lungs. Ugh!!!!

7:00pm

Dr. Walker came back. She told us with a smile that they reviewed Lily's X-Rays and Fluoroscopy and they did not see a leak. Ok. That's good. That means the surgical site is in great shape!!

However . . .

. . . they did see another fistula (bridge) between the Esophagus and Trachea. This is how the dye was able to go from her Esophagus and into her Trachea. She immediately aspirated it and the dye went into her lungs. They said they were going to start Lily on Anti-biotics to prevent infection/pneumonia.

Dr. Walker said she can't say for sure what route Dr. Caty will take to fix this fistula. She said that Dr. Caty will definitely want to do more tests to find out why this fistula was not noticeable when the surgery was done. Dr. Walker said that it could be so small, that it could have been camouflaged by a flap of tissue or something.

But either way, it will have to be fixed. It is now just a question of how. Most likely another surgery.

Oh Lily!!!! You are such a wonderful trouble-maker!