January 20th, 2010 -- Surgery #2

Morning


Another big day for Lily. Surgery is scheduled for 9:30am. Tracy and I arrive at the hospital at about 7:30. Lynn is Lily's nurse again. It is almost as if it's planned! Lynn has been Lily's nurse for all of the big days --Surgery #1, contrast study, and now surgery #2.


The plan that Dr. Caty discussed was that he would first perform a Bronchoscopy, which is to send a small camera down Lily's throat and look for another fistula. He said that it would be extremely rare for Lily to have another fistula so he is not convinced there will be anything there. However, if he does find anything, he will come out to the waiting room to explain it to us, and then he will complete the surgery to repair it.


We are all nerves. It is a big day and we are eager to have this behind us. Unfortunately, we just have to wait. Little Lily is the one who has to go through the procedure. I am lucky enough to hold her for about 30 minutes before the surgeons call Lynn to say they are ready for Lily (Thank you Tracy!!!). I hold her close and whisper prayers with her until Lynn takes her from me.


9:45am

Tracy and I are in the hallway with Lily and Lynn waiting for the surgeons to wheel Lily to the operating room. Much like her first surgery, Dr. Caty comes out to greet us. He shakes both of our hands and gives us a warm smile. There is just something so wonderful about this man. Just a look and you know that everything will be just fine. We have a short conversation and he introduces us to the anesthesiologist. Ugh, these are the guys that make me nervous!! He seems like a good guy though, very friendly. As we say our goodbyes, Dr. Caty says he will see us in about an hour with the results of the Bronchoscopy.


10:30am


I am pacing the hallway outside the waiting room when Dr. Caty comes out of the operating room. I call Tracy and she runs out to meet with us. Again, Dr. Caty's smile comforts us. He held up a piece of photo-paper with 4 pictures of the inside of Lily's Trachea on it. He points at the first picture and shows us where Lily's first surgical site is. "As you can see," he says, "it's healed nicely and there are no problems there." He shows us the second picture and says that it is a picture of an area just above the original surgical site. There is a small area that he refers to as a "dimple." He said that Lily had multiple "dimples" inside her airway. "They look completely normal and when we put the scope in, we do not see any evidence of another fistula."

He continues to explain that they used air pressure to force air into each of the dimples in Lily's airway. He shows us the third and fourth picture. They look identical to the second picture of the dimple, except these have a large hole right in the middle of the dimple. "This is what happens when we shoot some pressurized air into one of the dimples above the surgical site." It looked huge in the photo, but he said in reality is is only about the size of a pencil tip. So he took a small tube of polyurethane and put it into the hole. This will help him find the hole since he has to access the area through Lily's original surgical site. Then he will stitch the hole closed. "This procedure will be much easier than the first surgery," he said. "I'll see you in about an hour."

Did I mention that was at 10:30am???


12:30pm

Nervous Nervous Nervous. Dr. Caty said an hour. It's been two. Tracy and I are freaking out. Our families don't look that calm either. What can be taking so long!!?

After discussing it with Tracy, we decide that I will go back down to surgery to see if anyone has an update. When I get there, the place is empty! Well, there is one couple in the waiting area, but I doubt they will be any help. I am pacing the hall aimlessly hoping for someone to walk by. Anyone.

Finally, I see one of the Attending doctors walk by. I stop him and ask if he has heard anything. He kinda looks at me confused. He said, "I was just in there about a half hour ago and everything looked fine. Do you want me to check again?" ummmmmm.....YES!


Five minutes pass and I am going nuts. Finally, he comes out along with Dr. Pierre. "Everything's fine," he said. "You know how doctors are!!"


1:00pm


The nerves aren't as bad but I am still wondering how one hour has turned into nearly three!? I am sure everyone else is wondering the same thing.


Tracy and I are wandering the hall, into the waiting room, back to the hall. Luckily our families are there for support and to waste time with. It really helps!


1:25pm


Dr. Caty arrives smiling. I am not ashamed to say I Love that smile!! PHEW!!! Everything went fine, he said. It took a little longer because "anytime you re-enter a surgical site, you want to be very careful and methodical." He explained how he stitched the fistula closed and just to make extra sure, he completed a water test that I still don't completely understand. From what I could gather, they filled Lily's stomach with water. Then the anesthesiologist manipulated the vent to have Lily breathe two good breaths. The point was to see if there were any bubbles of water coming out of the surgical site. All was good!


2:30pm


Lily is wheeled back to the NICU. It;s another Lily parade!!


She came back the same way she did last time. Ventilator, Chest Tube, and Replogle (nose tube that extends to her stomach and keeps the surgical site steady). The recovery will be almost identical to her first surgery, however, they may start feeding her as early as Saturday (not bottle yet, but through her Replogle).


Lily is a lot puffier this time though. She did get a blood transfusion and was filled through her IV with LOTS of fluid to keep her hydrated during the surgery. Tracy and I joked that she just got out of the ring with Rocky Balboa. Lynn said it looked like she got hit by a truck.


Either way, it's not especially pretty. However, this is part of Lily's story, so pictures are inevitable. Tracy and I are not only keeping this blog to keep our friends and family informed. We are also using it to hopefully help other families like us. We came into this blind, not knowing what to expect. Hopefully, other parents of children with TEF will find this and use it to help them through their ordeal.


Besides, Lily is beautiful no matter how many punches it looks like she took!!