Disappointing Tuesday

We arrived at Children's Hospital at 7:30 am yesterday and were full of hope. Kiera was admitted for day surgery by 8:30 am. We were nervous and excited for her dilation and were hoping that afterward we would be able to start training her to drink from a bottle again.

We had decided against the G-tube because we believed that once her esophagus was stretched open, she would resume feeding and would prove to us that she didn't need the tube anymore. The woman who makes the prosthetic eye cups was going to make an impression of Kiera's right eye prior to the dilatation procedure.

Kiera went into the OR at 10:00 am and we decided to get a bite to eat and then wait in the parent post-op waiting room. I can't remember what time the surgeon came to speak with us but it felt like an eternity. Kiera's regular surgeon had been stuck in another city and she had asked a colleague of hers to step in. He said that Kiera was doing fine in recovery and we could see her as soon as she woke. He then showed us the picture of Kiera's stricture. He explained that the stricture was so narrow that he couldn't get any of his tools down there to stretch it. He was attempting to do this through Kiera's mouth and he explained that by going up to the stricture from the stomach (via a G-tube opening) he would have been able to open it somewhat. Unfortunately, he never left the OR to let us know this before Kiera left the OR -- we may have reconsidered the G-tube.

After this we were very upset. I felt like we had made the wrong decision regarding the G-tube. In day surgery recovery, I couldn't help but cry. The nurse assigned to Kiera decided to contact Kiera's regular surgeon and demanded that she come to speak to us as soon as she arrived at the hospital. The surgeon agreed to meet us later in the afternoon.

The plan for next week Tuesday is for Kiera's surgeon to take a look at the stricture through an endoscope (a long, thin, flexible tube containing a light and a video camera). Based on what she sees, she will decide how to go about opening the stricture. What will likely happen is that she will not be able to open the stricture through the mouth and she will have to place a G-tube. Then a string will be connected from the G-tube opening through the esophagus to the nose where it is stitched into place. This string will be attached to Kiera semi-permanently and will be used to help the surgeon guide her tools to the stricture during Tuesday's procedure and the many more future dilatations.

Following the surgery, Kiera will stay in hospital for two nights. If all goes well, she will be discharged on Thursday. Keith and I will have to learn to feed Kiera in another way. Apparently, caring for a G-tube is "no big deal", "easy", and "is freeing".

More to come. . .